After a long time a new Update again
Hello,
It’s been almost three quarters of a year since Mika’s surgery and we would like to give you a small update on what has happened for Mika in the last few months and how they are doing:
Six months after surgery, Mika was able to do something for up to six hours a day, such as working on the PC, small interactions with others, moving a little and sitting upright. Mika has started to shower on their own and is no longer so dependent on the help of others for many things and is becoming more independent: “I’m gradually reassuming a little of the role my primary caretaker has carried out for me, and aiming to make life a touch more comfortable for my family, which is a great pleasure and relief for me”
Recently, Mika no longer has to wear the neck brace all the time and has a new sense of stability in their neck that Mika hasn’t had in years and took for granted before Mika’s illness.
Perhaps the most significant change in Mika’s daily life is in leisure: something that’s been a fairly faded area for them, though one they are lately becoming more able to give focus as they move out of a mode of survival and contemplate what living comfortably might look like.
Recently, Mika started attending a weekly online psychotherapy session with the aim to begin slowly to untangle the events of the years of illness and the surgeries themselves, and hopes to increase a sense of healing from the inside outward.
The only not-so-good news is that beginning to taper off the steroids Mika took after surgery to prevent inflammation in the brain and spine, some unwelcome symptoms have returned and Mika spends the evening and night with fatigue, moderate to severe nerve pain and flu-like symptoms.
However, it is still early in a healing process that will span several years, and Mika is very hopeful that things will slowly start improving again in the coming months.
Mika feels that they are already far ahead of what could be expected at this point in recovery.
“8 years spent acutely ill; 3 years critically, 2 international air ambulance journeys, 3 months in hospital and an assisted care facility, 20+ hours on the operating table, 8 days in the ICU, 3 litres of blood transfused and a truly astonishing 6 figures raised, thanks to human kindness.
What a story we’ve written together; all to arrive here: the quiet days of recovery for me; watching the songbirds at the feeder through my bedroom window in silent thanks.
With Much Love,
Mika”
Today Mika is flying back home
We can hardly believe how fast time has passed, but already today Mika is flying back home to Scotland by air ambulance.
During the last weeks Mika has been recovering more and more from the surgery, and at the same time they had to plan and organize a lot of things: the return journey, final examinations in Barcelona, and the necessary care, aftercare and support for the time back home.
It was very emotional for Mika to say goodbye to the team in Barcelona and to know that they will soon be very far away from the experts who know Mika’s condition well and where Mika felt so well taken care of. But Mika is also full of hope and ready for the next chapter.
We wish Mika all the best for the journey and would like to say thank you again to all who have accompanied Mika and us on this journey so far and made this surgery possible! <3
Mika is back in the care accomodation, we transfer the last donations
Mika was released from hospital a few days ago and is now recovering in the medical care accomodation. The first two weeks after the surgery were challenging because Mika was in a lot of pain due to the muscle cut in their back and everyday movements were difficult due to the initial immobility.
But Mika has come through the most difficult part so far. The swelling in their face, neck and shoulders is slowly going down and their red blood cells count are rising again, mainly thanks to another transfusion shortly after the operation.
Mika is already planning to return home by air ambulance at the end of the month. We are therefore transfering the remaining donations from bettterplace to cover the costs of the care accommodation and the return journey. The course of the treatment and the unbelievably great support make Mika feel very relieved:
“All through drifting in and out in the disorientation of the ICU, I kept thinking about how more than 1,047 people joined together to get me there (…), having the sense of you all nearby, as if I were being passed along atop hundreds of upturned palms. There is a long road ahead in recovery and rehabilitation, but we did it: my neck is fixed, my spinal cord is freed. Now all that’s left to do is to heal and wait to find out what might be on the other side.”
Thank you for accompanying and supporting Mika up to this point and making it possible for Mika to receive the treatment they desperately needed!
The surgery was succesful!
Dear supporters,
We are very happy to inform you that the surgery was successful and Mika is doing well under the circumstances.
The operation lasted a total of 13 hours – longer than planned – and a large amount of blood transfusions were necessary. Apart from this, the surgery went according to plan. Mika is very grateful to all the blood and bone graft donors!
The pain is getting better every day and Mika can already sit upright for a few minutes at a time with the stabilized neck. On Tuesday, Mika was transferred from the intensive care unit to the normal ward. The doctors are pleased with the course and the progress.
We are very relieved and wish that Mika recovers well from the surgery!
Thank you for your continued support and kind thoughts and encouragement!
Mika and friends
Today is Mika’s surgery!
Today is the day of Mika’s major surgery on their cervical spine. The operation takes about 8 hours. Afterwards, Mika will spend several days in intensive care. We will inform you about the course of the operation in a few days.
Our thoughts are with Mika and we wish them all the best for the operation! <3
Promise for a donation covering the remaining sum
Dear all,
we have great news: We have received a promise from a foundation that has already supported us once to cover the remaining €15,000 that is still missing. A very big thank you to the foundation! We will post the donation here on betterplace as soon as the money is in our account.
You can imagine that this news is a huge relief. We are really very happy that now – just before Mika’s big operation – the donation goal has been reached. Now Mika can concentrate on preparing for the surgery and we can be with Mika in our thoughts without having our heads full of money worries and organisational fundraising issues. Without the amazing support from all of you, we would never have made it this far.
With the help of all of you, we have made it possible for Mika to get the urgent treatment they need. Now we hope that the operation on Friday will go well and that Mika will be able to regain some of their quality of life.
We are thinking of Mika and wishing them all the best!
Only one week left until the surgery!
Finally, the time has come – Mika’s major cervical spine operation will take place in just one week. For years, Mika has been hoping for this operation, which the health insurance does not want to pay for, although Mika needs it so urgently.
We would never have thought that we would receive so much help and solidarity: In the meantime, we have already raised 145.450€ for Mika’s vital treatment. Many of you have helped to spread the word about the campaign in the last few days and some have even donated repeatedly for Mika. We cannot express how grateful we are to all of you.
Thanks to your help, we have now been able to pay the deposit for Mika’s cervical spine surgery to the clinic. In order to cover all costs, we are still missing about 15.500€, which we will use for Mika’s air ambulance flight back home after the operation. Due to their severe illness, Mika can only travel by plane with a professional ambulance.
Thank you all for your continued support <3
What exactly will happen during Mika’s cervical spine surgery?
The instability in Mika’s upper spine results in the spine putting pressure on the brain stem and squeezing the blood vessels that supply the brain. This is life-threatening and leads to a range of different symptoms, that caused Mika only being able to lie in bed in a darkened room for the last couple of years. The disease means that Mika can hardly sit up straight, can only speak with difficulty and cannot walk more than a few steps, and that any stimuli and interaction with people is very stressful.
Hopefully, the surgery will help Mika regain some quality of life. Originally, it was planned that only the top two vertebrae would be fused with Mika’s skull during the operation (“craniocervical fusion”). But after the examinations of the last weeks, Mika’s neurosurgeons believe that this smaller procedure is probably not effective for Mika. They recommend fusing the bones from the skull to the second thoracic vertebra, so that they will grow together into a stable column of bone supported on both sides by a metal scaffold, with an additional stabilising plate attached to the back of Mika’s skull.
This will have drastic consequences for Mika’s mobility. Mika writes in response:
„I will no longer be able to turn my head at all, neither look up nor down: I’ll need to move using my waist as my axis. There will be many activities I’ll no longer be able to do, which require a range of motion in the upper body: cycling, driving, swimming, dancing, to name a few. However, these are things which my illness has made not possible for many years, and as that cannot change without a medical intervention, these are activities lost to me permanently – or at least in recognisable, unadapted forms – either way.“
Mika will also have to relearn basic everyday tasks such as speaking, swallowing, eating, drinking, brushing their teeth or getting changed after the operation with a radically altered anatomy. But there is no better alternative for Mika, and despite everything, the surgery gives Mika hope. Mika says, “I’m not going to tell you that I feel brave, though I am willing.“
We are impressed by Mika’s determined approach and wish Mika all the strength and confidence.
Thank you all so much for making this big step possible for Mika!
There is an appointment for the second surgery!
After Mika was brought to various examinations by ambulance last week, we finally have news for you.
Years of uncertainty and waiting will soon come to an end, Mika will finally have an operation on their cervical spine! The clinic is planning the second operation for 28 October.
The medical tests have shown that Mika’s symptoms will decrease significantly the more support and relief Mika’s neck receives. Because of Mika’s connective tissue disorder the weight of their head needs to be particularly relieved. Two discs are also displaced and protrude.
Therefore, a larger fusion is necessary than previously assumed. During the operation, the bones from the skull to the second thoracic vertebra are to be fused.
Unfortunately, a larger operation also means higher costs, due to additional material, a more complicated operation and a longer stay in the intensive care unit and in the medical accommodation afterwards.
We are planning on €11,350 in additional costs for surgery and €5,600 in accommodation. Therefore, we will increase the fundraising target of this campaign by €16,950.
After the operation, Mika will have to get used to the restricted movement possibilities and the new weight distribution in their body and learn to live with it. Nevertheless, the operation is the possibility to improve Mika’s threatening health situation and to gain quality of life in the long run.
We therefore ask you once again: Share the call for donations, talk about Mika’s situation with those around you and pass on our fundraising campaign to your networks!
We are infinitely grateful for your huge support – without you, none of this would be possible. We will take the last steps to Mika’s surgery together!
Mika recovers and plans what to do next
On Monday, Mika went to the clinic to have the surgical staples removed.
Thanks to good distraction tactics, it was not very painful and Mika came through it well.
Since then, there has been another longer trial with the traction brace to see what improvements could be achieved with the cervical spine surgery.
On this Mika wrote to us: “When I was in the hospital wearing the support brace, a nurse took me outside in a wheelchair. I could see the butterflies, the parrots flying around among the palm trees and feel the wind and the sun, and for the first time in many years I could enjoy it because neither all the impressions were too loud and too bright, nor was I too sick to understand what was happening around me at all!”
In the next few days, Mika will discuss the result of the test with the doctors and make a plan on how to continue the treatment and undergo further tests and examinations.
In the meantime, there is not much money left to reach our fundraising goal and to finance Mika’s return flight.
Please help once again to share the fundraising campaign with those around you so that we can make it happen.
Thank you so much for your support so far! <3
Mika is doing well after surgery
Mika came through the spinal cord surgery well on Friday and was able to tell us themselves today how they are doing:
„I’ve to lie flat on my back to prevent the material encasing my spinal cord from springing any cerebrospinal fluid leaks around the operation site, but I’m surprised by the upward gradient in being able to move my legs freely over the last 2-3 days.
All being well, I expect to be realised from the ICU back onto the ward today, where I can begin trying slowly to sit up and move to the bathroom. Once I can do that unassisted I can go home to the assisted care facility where my father and I are staying nearby.“
Once Mika has recovered sufficiently from the spinal cord surgery, the second surgery can then take place to stiffen Mika’s cervical spine.
Today we transferred 11.051,73€ collected donations from betterplace to our association account. The money is needed for Mika’s Air Ambulance return flight home after the second surgery.
Mika would like to thank everyone who made the surgery possible for them. Thank you for accompanying and supporting us up to this point, all this would not have been possible without the help of so many people!
Mika’s first surgery
Today, Mika’s first surgery will take place. In this operation, Mika’s Tethered Cord will be treated. The spinal cord has grown together with surrounding tissue. You can read more about what this means here: https://www.betterplace.org/de/projects/80457/news/267269.
During the operation, the attached spinal cord is separated (Section Filum Terminale/SFT). Afterwards, Mika will spend about two days in the intensive care unit and then recover from the operation in a nursing home near the clinic.
We will keep you updated on how Mika is doing!
Thank you so much for all your support and the incredible many donations -it means a lot to Mika and to us!
Tests in Barcelona
Hello dear supporters,
Mika has now undergone extensive scans and check-ups.
An MRT with a special artificial intelligence patch was performed, which examined the nerves at the lower end of the spinal cord. There was also a CT scan of the cervical spine and a 360° motion X-ray of the head in various extreme positions and a neurophysiological examination of the nervous system. Very clear signs of tethered cord were found.
At the moment, Mika is wearing a traction brace that keeps their head upright. This is to assess the effects of the surgery on the cervical spine. For Mika, it is a completely new feeling to be upright more easily for the first time in years and to be able to walk a few steps more effortlessly.
Thank you for walking this path with us!
The first surgery will take place on Friday and we send Mika lots of strength and love!
Mika has arrived in Barcelona!
This morning Mika flew to Barcelona with the Air Ambulance. We are relieved that Mika withstood the journey and has now arrived in Barcelona. In the next few days, the tests necessary for the surgery will be carried out in order to get an exact picture of Mika’s health condition and to be able to make a specific diagnosis. We look forward to the next days with confidence and wish Mika all the best.
We are so grateful that this is all possible because of your amazing support! At the moment, we still need about 12,000 € to cover all the costs. Please talk to your friends and acquaintances about Mika’s situation and share our fundraising campaign!
Only 2 weeks left until surgery!
There are only 2 weeks left until Mika‘s surgery and we have come a lot closer to our donation goal in the last few days! Many thanks to all who have supported us in so many different ways. At the moment there are still 12,000 Euro missing and we are quite optimistic to reach the goal!
We were able to transfer the money for the first surgery to the clinic today (it has to be paid in advance as a deposit). Also for the second surgery we could collect enough donations thanks to all of you. What is needed now is the money for Mika’s air ambulance flight back home after the operation. Mika can only travel by air with a professional air ambulance because of the seriousness of their illness.
There is still a lot to organise until Mika starts their journey, but we will continue to keep you informed with short updates.
The last weeks have shown us that together we can achieve a lot.
Please keep sharing and donating!
Have a nice weekend everyone 🙂
Only 3 weeks left until surgery!
There are now just under three weeks left until the operation! Mika is already excited that it‘s going to start soon. Now Mika has to do the last preparations until they will fly to Barcelona in two weeks.
What exactly is planned?
- Mika will travel to the Teknon Medical Centre on September 2nd with a medical ambulance flight.
- First, various tests will be carried out there to specify the diagnoses once again and to prepare for the operation. Since the clinic specializes in Mika’s unusual clinical picture, these can only be performed there.
- During the first surgery on September 9, Mika’s “tethered cord” is treated. This means that Mika‘s spinal cord is fused to surrounding tissue. During surgery, the tethered spinal cord is separated (section filum terminale/SFT).
- After the surgery, Mika will stay in the clinic for a few days and then recover for one to two weeks in a medical care accomodation near the clinic.
- The second procedure will be the major surgery on Mika‘s cervical spine at the end of September. Mika’s unstable cervical spine will be stiffened to take off the pressure on their brain stem, upper spinal cord and blood vessels caused by the instability (craniocervical fusion/CCF).
- Afterwards, Mika will probably stay in the clinic for another two weeks and then again for about three weeks in the medical accommodation, where Mika will also receive nursing care.
- After that, Mika will be flown home again by air ambulance.
The exact schedule will of course depend on the previous examinations and tests, the course of the operations and Mika’s healing process.
We have already achieved so much – there is still about 16,000€ missing. We firmly believe that together we can make the surgery possible for Mika. Please help and share again the fundraising campaign in your networks.
Thanks a lot for all your support and solidarity!
Some information about ME/CFS
At the moment there is a lot of media coverage about ME (also called Chronic Fatigue Syndrome), because it is suspected to occur more often in long covid patients. What exactly is ME and what does it mean to live with it?
ME stands for Myalgic Encephalomyelitis and describes a complex clinical picture.
The German Society for ME/CFS e.V. estimates that approximately 17 million people worldwide and 250,000 people in Germany are affected.
In addition to severe fatigue (physical weakness), affected patients suffer from neurocognitive, autonomic and immunological symptoms, such as palpitations, dizziness and hypertension, severe pain, muscle cramps and hypersensitivity to sensory stimuli.
The most severely affected patients with this chronic inflammatory disease are bedridden and must spend their daily lives in a low-stimulus environment (such as darkened rooms).
ME often begins after an infectious disease such as Epstein-Barr virus or influenza. SARS-CoV-2 infections can also trigger ME. Studies suggest that approximately half of long-covid patients meet the diagnostic criteria for ME/CFS after six months. However, the exact mechanisms and causes of the disease are not well understood and there are no approved cures to date.
For years, ME was not taken seriously and patients were fobbed off with platitudinous (and sometimes harmful) tips such as healthy eating and exercise, or the symptoms were blamed on psychological causes. Therefore, patients demand that the disease is better researched and more information is provided. Specialized contact points and comprehensive medical care close to home are needed!
More information: www.mecfs.de
A video message from Mika
Here comes a video message from Mika. Mika expresses their deepest gratitude to all supporters in it and demands that all people get access to appropriate health care.
Hear Mika’s moving words for yourself (english with english subtitles):
We have a surgery date!
We have good news: The clinic has now proposed a concrete date. The first surgery on Mika’s spinal cord can therefore already take place on September 9! Before that, some more examinations have to be done on site. When Mika has recovered from the first operation, the cervical spine surgery can then take place at the end of September.
We made a first deposit to the clinic now, so that they can confirm the date. We are very excited and joyful that the time has finally come and now the surgery can be planned very concretely!
At the same time, this also means that there are only 5 weeks left until the first surgery. In order to be able to pay for both surgeries and Mika’s transport to Barcelona and back, we still need about 26.000€.
Please help us and spread the word about our campaign – only with the support of all of you we can do this. Health care is a human right, but in Mika’s case the health insurance does not want to pay for the surgery they need so urgently. That’s why it’s even more important that we support each other and make it possible for Mika to receive treatment!
Current cost plan
Thank you to all who have now donated again! Together we will make it!
We have now updated all the cost estimates. Here is an overview of how much money is needed for which expenses. Due to the fact that the second surgery on Mikas spinal cord (tethered cord) has become necessary, the amount that we need for the surgery has increased a little.
The good news is that with the donations we have collected so far, we can already almost cover the costs for both surgeries and the medical care accomodation where Mika will stay for a while after the hospital stay!
Mika has also privately collected donations for the ambulance transport on the way there. What is still missing now is essentially the sum for the return flight (approx. 23,538€). Since Mika is bedridden and even small concussions can be dangerous for their unstable cervical spine, a professional ambulance transport via Air Ambulance is necessary, which is unfortunately very expensive.
Here is our cost plan:
- Operations
Tethered cord surgery: 40,350€
Cervical spine fusion: 71,084€ - Medical Care hotel MIC Saint Jordi
Accommodation and caregiver: 9.123€ - Ambulance transport
Air Ambulance: 23.538€ for the flight back - Total costs: 144.095€
So at the moment there are still about 26.000€ missing. The money is mainly needed for Mika to fly back home after the operations to recover there.
Please share our campaign in your networks and talk about it with your friends, family and acquaintances!
Update on Mika’s health situation and the plans for surgery
We would like to update you on Mika’s health situation and the plans for the surgery.
In the course of the past year, it has become clear that Mika very likely suffers from Tethered Cord Syndrome in addition to the Craniocervical Instability. “Tethered Cord” means that the spinal cord is attached to the surrounding tissue. In Mika’s case, it is Occult (hidden) Tethered Cord Syndrome, which is very difficult to diagnose because it is not visible on MRI scans.
The clinic will verify the diagnosis after Mika’s arrival and is now planning Mika’s treatment in two steps: The first procedure is to release the tethered spinal cord. Two to three weeks later, the long-planned surgery on the cervical spine will take place in a second procedure.
What does Tethered Cord Syndrome mean?
Because the lower end of the spinal cord is not free to move in the spinal canal, as is normally the case, but is fixed, the cord exerts traction on the brain stem. In Mika’s case – in connection with Mika’s connective tissue disease – this could also be the reason why the cervical vertebrae have become unstable, because the body tries to give in to the pressure and protect these vital internal structures.
The tethered cord leads to deformities, pain and numbness in the legs and feet and to all kinds of metabolic, vascular and nervous system havoc as the cord becomes progressively starved of blood and oxygen under the tension and essentially “strokes out” (ischaemia) in response to minor body movements.
Based on Mika’s symptoms, the clinic in Barcelona believes that Mika has Occult Tethered Cord Syndrome. The clinic will carry out special tests, including electric current and AI-assisted scans, after Mika’s arrival to make a definitive diagnosis. The procedure involves separating the spinal cord from the surrounding tissue and inserting a stabilising device into the spine.
Unfortunately, Mika’s health insurance is also unwilling to cover the costs of this procedure and has confirmed that Mika will not be able to get the surgery through the NHS – the state health system in the UK. So we are once again depending on your solidarity to help Mika access the medical treatment they desperately need!
Our fundraising goal will increase a little bit and we will send you an updated cost breakdown in the next few days.
You can find more information about Tethered Cord Syndrome here: https://me-pedia.org/wiki/Tethered_cord_syndrome
19th july 2022
Dear all,
we have good news: It looks like Mika can finally get a surgery date this fall! Last week Mika had a preliminary meeting with the surgeon to assess Mika’s health condition and plan the surgery. We can hereby inform you that the admission process in the special clinic Teknon in Barcelona has now officially started. The first surgery can then most likely take place in the beginning of September! We will be able to share more detailed information with you in the next few days.
In the last months Mika has achieved a lot: Mika was able to gain more weight (due to the disease and related digestive problems Mika was severely malnourished) and stabilize their health to the point where Mika can cope with the surgery. In addition, Mika was able to overcome a major bureaucratic hurdle and is now finally receiving social disability benefits for daily living expenses. Mika’s care network in Scotland and connection to local doctors could be expanded, so that Mika also has support after the surgery and can plan the aftercare.
Mika’s health insurance confirmed again that they cannot offer and do not cover the surgery in the UK.
Now it’s time to plan the surgery: we are currently updating all the cost estimates. Mika’s trip to Barcelona and the accommodation on site have to be organized. And we as a circle of friends and support group are now concentrating on collecting the last donations.
At least 20.000€ are still needed, please all share our campaign again, because there are only a few weeks left until the long awaited surgery!
Thank you to everyone who hung on with us to this point and has not given up hope (where due to the uncertain times and poor planning ability, already several times planned surgery dates had to be postponed)!
Our campaign not only shows gaps in the health system and in medical care for marginalized groups, but also that we can achieve a lot if we stick together and support each other!
24th Oct 2021
Hello,
it’s been a while since our last update, so please excuse, that you have not heard from us for such a long time. The last months have been very stressful and difficult and we haven’t managed to keep you up to date.
Mika has been very unwell lately. The uncertainty of when the surgery will take place has been very hard for Mika to bear. This uncertainty and Mika’s difficult life situation have triggered a comprehensive health crisis for Mika.
Right now, Mika’s and our focus is on getting better and making Mika’s condition more stable. Mika is now trying to gain more strength to be fit enough for the operation, which hopefully will take place soon. In the meantime, Mika has already managed to gain weight, in spite of their many intolerances and thus to get into a better physical condition. And Mika now also has support to deal with the psychological strain that the disease brings with it. In addition, a lot is being done at Mika’s home to make everyday life better for Mika and to set up an outpatient care
and support structure, as Mika’s parents are no longer able to provide care and support well on their own.
Even though a lot has already been achieved, we suspect that it may still take a while until Mika regains their strength. But we will try to keep you up to date as much as possible.
We would also like to take this opportunity to thank you all again for your help and continued support so far!
Mika and we are not giving up hope!
31th May 2021
A Video Message From Mika
Mika made a little video message that we would like to share to you.
Towards our fundraising goal, we still need € 23,000 to cover the cost of surgery, pre- and post-operative care, and patient transport.
Please help with forwarding the call for donations and share it in your networks and via social media!
Thanks a lot to all of you for the donations and great support so far! Together we will make Mika’s life-saving surgery possible!
31th May 2021
Update: Surgery only possible after the summer break
Hello!
It hasn’t been long since our last update, but there is news from the clinic that we want to share with you.
Unfortunately, the clinic has informed us that the preponing of Mika’s surgery will not work out due to staff shortages and delays caused by the Covid 19 pandemic.
So Mika will not be able to have surgery until after the summer break.
We send Mika a lot of strength and stamina for the coming months and hope very much that Mika’s health condition will not deteriorate so much, so that Mika can still manage the upcoming surgery well. There is nothing left for Mika now but to wait and pass one day after the next.
As much as the news is a setback for Mika, it still gives us a little time to collect last donations to cover all costs for surgery, pre- and post-operative care, as well as patient transport. Currently we still need about 23.000€ to reach the donation goal.
Can you think of any friends, colleagues or relatives who might be interested in Mika’s story? Then help us to spread the word about this fundraising campaign! Only if there are many of us, we can make it.
We are infinitely grateful for the many donations, the sharing of our campaign in your networks and the great support we have received so far!
We will get back to you as soon as we have news!
Mika’s friends
13th May 2021
Final donations for Mika’s life-saving surgery!
After a long time we get back to you with an update! Maybe you have already asked yourselves how things have been going.
The clinic in Barcelona could not offer any appointments in the last months because of the Covid-19 pandemic, and also our work was made difficult under these circumstances.
But now, finally, the surgery is getting closer! Mika will possibly get an appointment from the clinic for June!
Unfortunately, Mika’s condition has continued to deteriorate dramatically over the past few months. Mika has lost a lot of weight due to illness-related intolerances, is completely bedridden and suffers from constant severe pain, respiratory arrest (apnea) and multiple neurological seizures daily.
The clinic now wants to prepone Mika’s surgery because they assess the situation in such a way that Mika may not be able to survive such a major surgery at a later date. Even now, Mika’s medical condition is life-threatening.
It is therefore important that Mika is operated on as soon as possible so that Mika can physically manage the surgery.
Therefore, we urgently need more donations to reach our fundraising goal and to cover the costs for surgery, pre- and post-operative care, as well as patient transport. Currently we are still missing 27.900 €.
So we ask you again for support, so that we can achieve this joint feat! Every contribution counts! At the same time, we would like to thank you all for the great support you have already given us, without which we would never have made it this far.
We are grateful from the bottom of our hearts!
Please tell Mika’s story and spread the word!
Mika’s friends
4th October 2020
Update concerning costs of Mika’s surgery and received donations
Hello!
We want to give a short update about the calculated costs of Mika’s surgery.
It has been difficult to figure out the exact amount because there have been many uncertainties (concerning the ambulance service, for example). We originally estimated a total sum of approximately 100.000 €, but unfortunately probably more money will be needed for the surgery and all related costs.
It’s only now become clear how the ambulance service to Barcelona and back will work, and how much it will cost. Mika’s health condition is so critical that a professional ambulance service is necessary. The safest and fastest possibility is by airplane.
As you can imagine, a private ambulance service by plane is very expensive. The cost comes to about 25.000 € each way.
That’s why our donation goal has increased to about 137.250 €.
The sum is composed of the clinic’s estimate of costs for the surgery (71.750€), the ambulance service (about 50.000€), accommodation expenses in Barcelona (about 4.000€), transport and fare costs there (1.500€) and the estimated rehabilitation and aftercare costs (10.000€) which also have to be payed privately, unfortunately.
We kindly ask for your understanding about the adjustment.
If you have further questions you can send us an e-mail.
We also have good news!
A foundation from GLS Treuhand e.V. donated a very generous amount of 65.000€.
Many thanks to them! We are totally overwhelmed! This enormous sum has made sure that we can already cover the majority of the costs.
We also want to say a big thank you to all of you who supported Mika. With your help, we have already raised 108.191€ in donations.
We still have some way to go before reaching our goal, so please continue to share our call for donations.
Many thanks and warm regards <3
Mika’s friends
26 August 2020
Today we want to share a message from Mika:
“Hello dears,
first of all thank you so much to everyone who donated! Seeing the fundraiser total going up every day is really keeping my spirits up.
In the last weeks my condition has as worsened again – I have to fight with severe allergic reactions (anaphylaxis). I spent my birthday in hospital this year, having some kind of systemic allergic reaction which left me unable to eat or drink. Because my throat was closed, my chest sounded a bit dodgy, a doctor in an antiviral space suit came out and sent me to the COVID ward in an ambulance. It was a place I’d been hoping to avoid, obviously.
I spent a couple of days there in isolation, got a negative swab, then was moved to the general ward. With antihistamines I became able to drink a little water and so my blood pressure gradually came back toward minimum normal. Used to a darkened room and hushed speech, the 24hour bustle & chaos and rigorous chemical cleaning infection protocols quickly made the environment more harmful than helpful and so I asked to be discharged home. Unfortunately not in much better state than when I went in.
At present my diet is restricted to small portions of puréed fruit and vegetables, and stolen gulps of water administered around antihistamines. Eating and drinking so little doesn’t help the issues I’m having with my blood pressure and circulation, which makes standing to get to the toilet an additional challenge, even with crutches.
With the NHS not equipped to deal with specialist care for complex conditions, especially not in a rural area away from large hospitals and during the chaos of a pandemic, I’m just trying to figure things out hour by hour.
I have an EpiPen. The worst throat closures / blood pressure drops come on so suddenly at all hours of the day and night, it’s hard to rest.
Hoping with the help of my friends, to have more positive news to share over the course of the summer and into the autumn.
Please don’t stop doing all that you’re doing – every share brings us a bit closer to the goal.
With Love,
Mika”
16 May 2020
Since receiving their diagnosis at the start of this year Mika has already managed to raise 10.130€ in donations on the fundraising platform Gofundme.
Together with Mika we want to thank everyone who has donated so far, or helped Mika in other ways! Its your support that helps Mika to not lose hope!
In the last months we – Mika‘s partner and friends in germany -got together to organise a bigger fundraising campaign. We all are doing this for the first time and needed to aquire the necessary knowledge first (for example about the law on charities and donations).
(Even though time is a pressing issue we didn‘t want to rush things, so there are no unpleasant surprises and the campaign can be as successful as possible.)
We got together with the non-profit and charitable association “Soziale Nothilfe e.V.“ who support us and together with whom we organise the fundraising campaign. This cooperation enables us to give you a donation receipt for donations over 200€ (if you wish to receive a donation receipt please write to: help.for.mk[at]protonmail.com)
Then the corona pandemic reached us and suddenly Mika’s situation and our work became even more difficult. Now many people get an impression of things that have been everyday life for Mika since a long time:
Suddenly, a lot of security collapses, the future is uncertain and for some people their own life is in danger. People who are in quarantine can no longer leave the house, social contacts are severely restricted and isolation is increasing. Instead of being able to pursue hobbies and dreams further, priority must be given to one’s own health and everything else takes a back seat.
For Mika, the current situation means that they are suddenly separated from their partner in Germany and can no longer be visited in Scotland. First, because the borders are closed and travel options are limited. But also because Mika and Mika’s parents belong to high-risk groups. A infection with Covid19 would be life threatening for Mika.
Mika’s health has not improved in recent months. Mika is more and more limited to lying in bed. This is often only possible in the dark, in silence and without activity or entertainment, alone with the pain and fear. (Because light and acoustic stimuli are mostly difficult to bear for people with M.E. and lead to a deterioration of the condition when overloaded.)
Mika also continues to struggle with breathing difficulties and seizures.
Despite everything, Mika does not lose courage and still manages to find nice moments.
Mika has already had a first online cosultaion with the surgeon and is in close contact with the clinic in Barcelona. After a period of corona-related restrictions, clinic operations have started up again.
We hope – if the fundraising is successful – that Mika can be flown and operated on in Barcelona in autumn / winter.
For us, one thing is clear: in a crisis like this, it is more important than ever to show solidarity and not to turn ones back on those who have it the hardest.
We are hoping for everyone to stick together, enable Mika to have the lifesaving surgery and get through this corona pandemic together.