“I have been extremely touched by Alex and Ayden’s story. Anyone who takes just one minute to truly personalise this situation could not fail to be moved and left in awe at such courage and spirit, not to mention hard work!
I am happy to lend my support and hope you will too whether it’s by giving a financial donation, collecting together unwanted clothes for the charity shop, writing a letter to the government or getting ten friends to sponsor you to swim ten lengths at your local pool!
Do anything because anything can help.
Thank you”
In June 2019, Britt Ekland’s (known for her roles in Get Carter, The Wicker Man, and as Mary Goodnight in the James Bond film The Man with the Golden Gun) son Nicholai and daughter-in-law Alison, sat her down and said they had something very serious to tell her. Worried at what the possibilities could be, she sat patiently through the explanation of an early diagnosis given to their youngest son, Lucas. “At 3 months old, Lucas was diagnosed with Adrenoleukodystrophy, ALD. We found out from the newborn screening results in California. ALD was added only a few months before he was born.” Horrified by this news, Britt immediately sprang into action. “We are so lucky to know this information about my grandson, Lucas. He is going to be 3 years old in April and is doing well. He is monitored very closely with MRIs every 6 months and blood draws every 3 months and if needed, we can do something about it because we have this information. Babies are able to be monitored from birth and their lives saved because we can intervene with treatment. How is it that the UK does not have newborn screening for ALD?” Britt has agreed to be our Patron at Alex TLC and we hope that from her experience with her grandson in California, changes will be made in the UK as well.
To find out more about Alex TLC Patron, Britt Ekland: Britt Ekland – Alex TLC Patron
“I met Sara, Alex and Ayden through a mutual friend. When Sara asked if I would be a patron for the charity, I was very honoured to be able to use my career to help such a worthwhile cause.
Before meeting the family I knew nothing whatsoever about ALD and have been devastated to hear of it’s appalling consequences. The charity provides a vital support network for families and gives grants for those most in need.
If you are reading this, I hope you can find it in your heart (and your wallet!) to help.”
“My daughter went to school with Alex, eldest son of Sara, the founder. When we heard about Alex’s diagnosis of ALD, I was fortunate enough to be able to use my influence to arrange a fundraiser by the cast of “Bad Girls”.
Having witnessed Alex’s relentless deterioration, it makes me sad that there is so little that can be done for sufferers of ALD. I have seen the battles Sara and Alex’s younger brother, Ayden have had to face, and am only too happy to be able to help raise the profile of the charity. It is vitally important to have a comprehensive support group for such a horrific and rare disorder, and have watched the charity go from strength to strength over the years. It is an honour to be involved. This awful disorder has to be stopped, so I urge you to support the charity in any way you can.”
