Reigan

Diagnosed with a rare, terminal condition as a child and faced with gruelling treatment, Reigan Walker is determined to let nothing stop her. Realising that she was transgender at 15 has presented more challenges as she fights for acceptance, while also bringing a sense of relief and freedom in understanding why she had always felt different to other boys.

Reigan Walker was diagnosed with adrenoleukodystrophy (ALD) at the age of 11, when she was admitted to hospital after a particularly bad bout of flu began to concern her mother. Whilst in hospital she had a range of tests and was diagnosed with Addison’s Disease (adrenal insufficiency). Further tests to determine the cause of her Addison’s Disease revealed that she also had ALD. A rare, genetic condition which most notably affects young boys, ALD can quickly take an individual’s ability to walk, talk and eat independently, often leading to death within a few short years.

Information on this rare condition amongst medical professionals without specialist knowledge was severely limited at this time, with doctors giving the family the diagnosis sending them away with one overwhelming headline – Reigan had just 4 months to live. After conducting their own research online and finding Alex TLC and Facebook groups of other ALD families, they began to question this prognosis and were advised by Alex TLC to seek expert advice from the specialist at Bristol Children’s Hospital.

Struggling to afford the long journey from Scotland to Bristol, the Walkers turned to Alex TLC for help, finding not only financial support but also a community which would prove invaluable to Reigan’s ALD journey.

Endocrinologists in Bristol and Glasgow offered new information and significant cause for hope: as Reigan’s condition had been discovered early, she was able to receive a bone marrow transplant. These transplants are the only possible treatment for ALD. Bone marrow transplants cannot undo the damage caused by ALD but can halt further progression of the disease. Despite this, doctors in Glasgow did not attribute any urgency to the procedure. Reigan’s mother spoke to Alex TLC for advice. Concerned, Alex TLC connected the Walkers to one of the leading UK specialists for bone marrow transplants for ALD, who managed to push the Glasgow doctors into action.

Intensive and painful chemotherapy before the transplant caused Reigan to lose her hair, and she was warned that her body may reject the donated bone marrow. She was lucky that the transplant was successful, but still spent 3 months in hospital in the summer before beginning high school.

Starting a new school so soon after such a gruelling procedure was difficult for Reigan, who also became increasingly aware of being different to other boys and feeling out of place. At 15, she realised that she was transgender and identified as female. Initially wary of the reaction she would get from others, Reigan spoke to her mum and made the decision to change her name while still in school.

Fortunately, her endocrinologists reassured her that her hormone therapy would not affect the hydrocortisone and fludrocortisone she continues to take for her Addison’s Disease. Without these, Reigan would be at risk of adrenal crisis; a medical emergency.

The Alex TLC community has been a great source of support for Reigan and her family, particularly at the Community Weekends, where they meet like-minded people who understand life with ALD. Although not always comfortable talking about her ALD with friends, preferring to wait to be asked, Reigan set up a Facebook fundraiser for ALD Life, raising hundreds to help us to support others coping with this devastating condition, including those she meets at the Weekends.

The Alex TLC community has been a great source of support for Reigan and her family, particularly at the Community Weekends, where they meet like-minded people who understand life with ALD. Although not always comfortable talking about her ALD with friends, preferring to wait to be asked, Reigan set up a Facebook fundraiser for ALD Life, raising hundreds to help us to support others coping with this devastating condition, including those she meets at the Weekends.

The effects of her ALD, including the time she had to take off school, caused many of her teachers to give up on her, telling her that she would never achieve academic success: she was “not good enough”. Reigan was determined to prove them wrong. Now 19, Reigan has decided she wants to become a psychologist, completing a short course earlier this year with her sights firmly set on university. This determination to succeed against the odds is strengthened by the people she meets at Alex TLC Community Weekends. Parents of boys with ALD have encouraged Reigan to pursue her dreams, as so many of them have seen their own children’s dreams shattered by ALD.

In the years since her successful bone marrow transplant, Reigan has seen some mild progression of her condition, with symptoms unusually only on the right-hand side of her body. Her older brother, who also has the gene for ALD, also has regular MRI scans to monitor progression of the condition but has never experienced symptoms of ALD. They know that many others are not so lucky. If her condition had not been detected so early, Reigan’s bone marrow transplant may not have been so effective. If the transplant had not been prioritised thanks to the efforts of ALD Life, Reigan said “if it wasn’t for the charity I wouldn’t be here today”.

For many, ALD is detected only once symptoms have progressed, and bone marrow transplants are not possible.

To detect ALD early enough to provide effective treatment, Alex TLC supports new born screening for the condition. Those with ALD could then be monitored for any progression of the condition and treated as soon as possible, as well as being tested for Addison’s Disease. Identifying newborns would also lead to testing of family members once ALD was detected, allowing others such as Reigan’s brother to be identified and monitored. Increasing awareness of the condition is vital for this and is an important benefit of Reigan’s fundraising efforts and her decision to share her story.

If your family needs support to cope with ALD, or if you are interested in meeting others remotely or at our Community Weekend events, contact us to find out how we can help.
If you or your loved ones are struggling with gender identity or talking to friends and family about being transgender, you can find information and advice on the Stonewall website.