Myles to Amsterdam UMC Dr Wolf Clinic Visit

Hello, I’m Georgia

My only child, Myles; has a progressive incurable ultra rare neurological disease, 4H Leukodystrophy otherwise known as 4H syndrome.

our world expert neurologist & researcher- Dr Nicole Wolf is based in Amsterdam UMC Netherlands. We also have Dr Genevieve Bernard in Canada who is currently running genetic tests on my & Myles blood, for research. I don’t anticipate I’ll ever meet Dr Bernard unfortunately due to the distance between Britain & Canada, but she works very closely with Dr Wolf and they are both incredible.

Myles was diagnosed in December 2021 aged 3, the summer of the year following I flew him to Amsterdam to see Dr Wolf so I could learn as much as possible to know how to best support my son and no better person to take him to than Dr Wolf. She diagnosed Myles before the NHS gene panels came back as id sent her his brain MRI scans and she confirmed the diagnosis plus mutation.

This was 4 years ago now as in just over a month time he is going to be turning 7.

I want to go back to take him to see Dr Wolf as this may be our final chance because as the disease continues to progress there will become a time he is deemed medically unfit to travel.

I will be funding the clinic visit myself I anticipate it to be around €500 / £450. The go fund me will be strictly for flights, accommodation and food

When I took Myles to Dr Wolf initially she gave me advice the NHS just did not know (NHS knowledge on ultra rare disease is very limited his consultants have never met anyone with this disease..) she told me Varicella (chicken pox) would be fatal to Myles and I must get him vaccinated against it; so when I came back to the UK I kept him off school for 6 months as this is how long it took to get him vaccinated, the hospital and GP didn’t know who should be doing it. Luckily he was only of pre-school age. It is also thanks to Dr Wolf Myles now has an immunologist, was diagnosed with igA deficiency and prescribed daily prophylaxis antibiotics. She initiated this.

lots has changed since we last saw Dr Wolf, he is getting placed with a feeding tube in September, he loses head control upon certain infections, he now wears a helmet to protect him from falls (severe ataxia) he wears 3 pairs of splints, his tongue thrust is getting more profound, he only manages less time in his standing frame as he used to, plus more.

I would love the opportunity to take Myles to see her just once more so I can get some advice around things I am deeply concerned about.

despite the nature of the initial clinic visit with her being brutal; she’d informed me Myles has a phenotype that is very rare to our 4H community and he has a severe course of what is supposed to be a slower progressive form, she had said she doesn’t expect him to live to be a teenager, it was upsetting and hard to hear but I have full trust in this DR and she is always giving the best advice on how I can ensure he has the best quality of life

thank you so much for reading

georgia x