"Why is my son's life not important enough?" - The Battle for Skyclarys:
Ataxia is a Greek word for “Lack of Order”. Our mission is to bring some order with Ataxia awareness.
As part of the Ataxia Aware project, we are sharing personal accounts of those with Ataxia or other rare conditions. We want to provide a safe space for people to talk about their experience with disability, whether themselves or someone close to them.
Disclaimer: Please respect that these are the personal views of the patient/family members.
Jake Officer had just turned nine years old when he was diagnosed with Friedreich’s ataxia. His mother, Sarah, had described Jake as being “perfectly fine, healthy and able until he was around seven years old.”
Sarah noticed that Jake’s posture was off and he could not stand straight when he was seven years old, which led to doctors appointments and Jake being diagnosed with scoliosis. After a two year stint with a spinal jacket in attempt to stop the curve, Jake had two titanium rods fused to his spine. Two days later doctors would notice a heart murmur. After even more tests, Jake was diagnosed with Friedreich’s ataxia.
Jake walked into his operation, but left in a wheelchair and has not walked since. His mother described the diagnosis as “the worst news you could hear”.
She has had to watch her son endure the degenerative disease, and go from watching her son run, jump and climb to not being able to dress and feed himself. Sarah described the process as “absolutely soul-destroying.”
At the time of writing, Jake is now eighteen years old and his family have joined the recent campaign to fund NHS access to Omaveloxolone, brand name known as Skyclarys, for patients with Friedreich’s ataxia.
Jake’s condition has not only affected him but the entire family. With Sarah working a part time job in order to be able to care for Jake, and the family not being able to spend quality time together.
The family has also struggled with a lack of support, with Jake not meeting some of the conditions for care from some hospice providers.
Sarah told us about the intensity of caring for Jake as she describes it as being a “prisoner of Jake’s condition through no fault of his own.”
The family feel that patients of Friedreich’s Ataxia in the UK including Jake, have been left “lagging behind”. So much so that she has told us that the condition has had an immense effect on her son’s mental health, even to the point where at times he has not seen a point in living.
Despite this, Sarah and her family are determined to give Jake all the care that he needs. She talked us through her experience of being Jake’s champion
“I battle everybody, you know, I battle the council, I battle social services, I battle everybody, you know, regarding Jake’s care. Of course I will. I’m his mum, you know, I’m his biggest champion, his biggest advocate.”
“He’s my world. He’s my firstborn, you know. And I think any parent would do the same.”
What Jake’s family, and many others within the Friedreich’s Ataxia community are battling for is for funding for NHS access to omaveloxolone.
Omaveloxolone is a licensed treatment for patients of Friedreich’s ataxia who are sixteen or older and is available in other countries, but not widely in all areas of the UK.
Recently the treatment has been approved for reimbursement in Ireland making it more accessible to Irish patients, which has given hope to Sarah that the treatment will soon be more available for patients like Jake, but still comes with some frustrations.
“I’m so happy for all of the families in Ireland. And I take it as a positive that if it’s being approved there, then hopefully the same should happen here”
“Our patients here in England are being left behind and they shouldn’t be.”
“Every day that my son or other people are waiting is the day that the damage is done. We can’t undo that day of damage. We shouldn’t be in this position where we’re waiting when treatment’s legal and available. You know, we should be able to access it.”
The Medicines and Healthcare products Regulatory Agency approved the treatment in April 2025, meaning that in some cases there is a partial gateway for some Scottish and Welsh patients to be able to access omaveloxolone. This is in contrast to England and Northern Ireland where no pathway exists.
“People in other countries, again, why are they getting it and not here in England? It’s crazy, isn’t it? Money shouldn’t come into it. Like, you know, when you look at it, this is people’s lives.”
We then asked her if she had a message for those who had the power to make this treatment accessible, to which she gave us this message:
“These FA patients, why are they not important enough? Why is my son’s life not important enough? He’s done nothing wrong. It’s not his fault that he’s disabled”…”Why hasn’t he got the chance, you know, to to keep his independence to keep his speech, his sight, his mobility? You know, a life is a life and he should be entitled to have the chance to live his life. And if there’s a drug that’s being approved and is safe and legal. Why can’t he have that? You would do it for your child. If it was your child, you’d want to do it, wouldn’t you? If it was your loved one. This is my loved one. So, you know, I want him to have the same chances.”
If you would like to sign the petition you can find it here
After many years of being a parent of an ataxia patient, Sarah emphasised how important it is to keep hope.
“Medicine is an amazing thing. You never know, do you? There could be something in the pipeline. When the doctor sat me down and said, Jake’s probably not going to live much into his 20s. Obviously, that’s devastating news to hear, but I’m a really positive person. And like, you know, who knows what’s around the corner? You just don’t know, do you?”
Sarah even had some advice for any parents of FA patients.
“They’re not alone. Like it does feel like, you know, when you’ve been given that diagnosis, you just, it is doom and gloom. You just think, oh, my God, it’s because it is a death sentence, like what they’ve just been dealt. But there are other families out there and there are some great communities out there. It took me a long time to discover the communities out there on Facebook. But we do have a great support network, you know, and just don’t hold back. Reach out. There are people out there that will help you.”
“I think maybe if I’d actually maybe talked about it a bit more, I put on this brave face, you know, like everything’s fine. Actually, everything’s not fine. Then we could have maybe got a bit more help and support in the earlier years. You don’t need to do it alone.”
Written by: Aneurin Read
We would like to thank Sarah for sharing her families story with us. We wish Sarah, Jake and the rest of the family the best of luck.
If you would also like to get involved and share your experience with Ataxia or another rare condition, please get in contact with us through our social media channels or our email.
You can find the petition here