Kim Apps suffers from pain and stiffness in her legs due to her AMN (adrenomyeloneuropathy). This can make walking difficult and often leaves her very tired. Kim is a carrier of adrenoleukodystrophy (ALD); AMN is the adult form of this. Her son Danny has ALD. This has led to sight problems and mild learning difficulties, but thankfully never to the deteriorating neurological symptoms seen in so many others, such as his younger brother, Billy.
It was around this time that Kim discovered an article in Women’s Own magazine interviewing Alex TLC founder Sara Hunt. The charity was not as established as it is today, with no charity shops or office base, but Kim was grateful to discover this support network; a lifeline that showed her that she was not alone. Billy’s death had devastated the family, as well as contributing to Kim and Mark’s separation and heightening fears for Danny’s future. Kim was amazed by Sara’s passion and commitment to help other families after going through similar trauma herself.
A strong source of support throughout the family’s heart-breaking ordeal, Kim’s mother has long participated in raffles and fundraisers with her line dancing group. Inspired by her mother’s efforts and Sara’s commitment to supporting those with ALD, Kim became a creative and powerful fundraiser for Alex TLC. She collects raffle prizes for the Community Weekend throughout the year, as well as trying out more fundraising ideas: she once spent a whole day in a wedding dress to raise funds!
Another idea centred around Billy’s favourite toy, a duck he named Gooky. Kim’s family and friends would pay to borrow Gooky and take him on holidays around the world. This helped to memorialise Billy, giving his loved ones an innovative and appropriate way to pay their respects. Photos sent back to Kim and Danny showed Gooky’s adventures, driving further fundraising.
As well as contributing to Alex TLC through these impressive fundraising efforts, Kim and Danny have also benefitted from support and grants from the charity. The clearest indicator for this is, unusually, the family garden. Overgrown and uneven, Kim’s legs and Danny’s eyes had prevented either of them from using this space. A grant from Alex TLC helped them to renovate the garden, laying down concrete and removing weeds to make a more accessible and welcoming outdoor area for them.
Many years after diagnosis, ALD remains a significant part of Kim and Danny’s lives. Fortunately, regular MRI scans have not shown any progression of ALD in Danny since his diagnosis and he has not developed further symptoms. This very rare phenomenon, which has no medical explanation, is known as arrested ALD
Danny continues to take Lorenzo’s Oil; which he calls his “Yuck” due to its notorious bad taste; and believes
this has helped him to ward off symptoms. His sight problems and mild learning difficulties can isolate him, particularly now his college courses have finished. A keen Arsenal fan, Danny enjoys attending football matches (he was once given a signed pair of boots by Jack Wilshere) and has named all of his pets after Arsenal players: cats Dennis and Freddie and dogs Bobby and Charlie.
Danny is searching for new social activities, often finding only disability groups which target those with more advanced needs; a common problem for adults in his position. Kim is hoping for more time for her own social life. They are still supported by ALD Life, with close connections to Sara, Support Services Manager Karen Harrison and many of the families they have met through the charity. Kim has attended almost all of the Alex TLC Community Weekend events, where she enjoys meeting others with the condition and has made many good friends. Both Kim and Danny are chatty, friendly and welcoming, with a positive outlook and a strong bond forged in facing pain and tragedy together.