F.A.Q.

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), 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).


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 estimates the risk for people with Mika‘s condition as high and therefore in most cases refuses coverage for similar surgeries in UK clinics. 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?

The surgery itself will cost in the region of £70-90k, depending on how extensive it needs to be. This will be determined on further testing once Mika is admitted (We will update the precise total here as soon as we have it).

The rest covers:

  • Preoperative testing
  • Inpatient care in Barcelona during the month Mika will be in the ICU, general ward
  • Transport and rented local accommodation Mika will need as an outpatient
  • Surgical insurance – in the event of post-surgical infection, hardware failure or the moderately likely discovery of issues elsewhere in the spine, Mika will need follow up surgeries, all of which can be insured for
  • Outpatient pain management meds
  • Rehabilitative physiotherapy

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, so it’s important to include it here.

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/

 



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