Why are we collecting donations both in the UK and Germany?
Mika is currently staying with their family in Scotland but over the last years Mika‘s centre of life has been in Germany where Mika‘s Partner and friends live.
Mika got severely ill while visiting their family. As a result Mika hasn‘t been able to return to Germany, but hopes to continue their life there after surgery.
Mika’s friends in Germany are organising this fundraising campaign together with the charitable organisation Soziale Nothilfe e.V.
What is Mika’s condition?
Mika’s acute illness, which Mika needs surgery for, is Craniocervical Instability (CCI).
On top of that Mika also has an accompanying chronic illness. Mika suffers from ME/CFS (Myalgic Encephalomyelitis or Chronic Fatigue Syndrome), a severe autoimmune disease which is not very well researched yet. We strongly suspect that Mika also has EDS (Ehlers-Danlos-Syndrome), a rare connective tissue disorder. Both illnesses are likely connected to Mika‘s CCI (Craniocervical Instability). In addition, Mika’s heart and circulatory system do not work properly as a result of brainstem compression (POTS – Postural Orthostatic Tachycardia Syndrome).
In the meantime, it has also been discovered that Mika suffers from Tethered Cord Syndrome. “Tethered Cord” means that the spinal cord is attached to the surrounding tissue. During the first surgery, Mika’s tethered cord is going to be seperated, then during the second major surgery Mika’s unstable cervical spine is going to be stiffened (Craniocervical Fusion/CCF).
Mika will need to learn to walk and use their body again due to the deconditioning which follows five years in bed. Also, with Mika‘s new cyborg neck, their centre of gravity will have changed entirely, and they will lose the ability to turn their head. Mika will need to learn how to use their body differently so as not to cause harm. We are told this rehabilitative work will count towards at least 50% of Mika‘s post-surgical outcome.
Why is it not covered by Mika’s Health Insurance?
Aside from the Craniocervical Instability, Mika has the accompanying chronic illnesses mentioned above, which have to be taken into account and lead to a higher risk during a surgery.
There are no clinics in the UK that are specialized for this and offer the surgery that Mika needs. The NHS (National Health Service) has confirmed in writing to Mika that they do not offer the necessary operations and examinations for Mika in the UK and cannot cover the costs in Barcelona.
Only a few clinics worldwide are prepared to appropriately take these risks into account. The clinic in Barcelona is the only one in Europe. For patients like Mika, their only option is to have surgery there and cover the costs privately.
What are the funds raised gonna be spent on?
Here is our cost plan:
- Operations
Tethered Cord Surgery: 40,350€
Craniocervical Fusion: 82,434€ - Medical Care hotel MIC Saint Jordi
Accommodation and caregiver for 3 months: approx. 14,723€ - Ambulance transport
Air Ambulance: 23,538€ for the flight back
(Mika has already been able to collect donations privately for the flight to Barcelona) - Total costs: 161.045€
If Mikas surgery cannot take place or less costs arise for any reason, all the (remaining) donations are passed over to the general budget of the association Soziale Nothilfe e.V. In that case the association will utilise the collected donation in the interests of this campaign for similar purposes: For other costs of necessary (health) care of Mika, or for other persons needing help in similar situations and social distress pursuant to the bylaw.
Why don’t you write “she” or “he” but “they” when talking about Mika?
Mika is nonbinary, so neither man nor woman. That is why we do not say “he” or “she” when we talk about Mika, but only use Mika’s name, or the English gender-neutral pronoun “they”. Please take this into account when sharing the campaign. Thank you.
More info on Mika‘s condition:
- Jeff Wood – the first patient with the same case history as Mika to receive this surgery, two years ago. It’s thanks to Jeff that patients are aware of the connection between these symptoms and issues with the craniocervical junction.
Link is to his story:www.mechanicalbasis.org - Jennifer Brea – the second surgical patient to follow on from Jeff’s lead, a documentary filmmaker and advocate for better research in this area. Her surgery was earlier this year and she writes compellingly about the process on Medium:
www.medium.com/@jenbrea/cci-tethered-cord-series-e1e098b5edf - Dr V Gilete – more info about this procedure and Mikas neurosurgeon in Barcelona:
www.drgilete.com/craniocervical-instability-ehler-danlos/