On our 12th Day of Christmas, Danielle tells us about her Husband Dave’s diagnosis of adrenomyeloneuropathy (AMN).
In 2009, at 28 years old Dave, my rugby playing, police officer husband started walking like he was drunk. On a holiday to Spain with friends, he suddenly lost the ability to wear flip flops, they would fly off his feet – it was the running joke of the holiday. Fast forward a few months and he started to have falls, walk with a limp and experience painful spasms in his legs. This was less funny – although we were still not overly concerned, he was young and apparently healthy, we thought perhaps a trapped nerve or a slipped disk was to blame.
On our 11th Day of Christmas, we hear about Sam’s diagnosis of ALD earlier this year.
Sam was diagnosed in March this year with adrenoleukodystrophy (ALD). His condition has deteriorated rapidly since diagnosis, and he is now completely dependent.
On our 10th Day of Christmas, you can help us to decorate our Virtual Christmas Tree.
You can help to decorate Alex TLC’s virtual Christmas tree by making a small donation to support our work.
On our 8th Day of Christmas, we hear all about Mila, who is the daughter of one of our Trustees.
Mila was born a healthy and beautiful baby. We were thrilled as we had experienced several miscarriages while trying for our second child. I always wanted to have two daughters, Gil didn’t really mind so I felt really grateful and complete. Mila’s arrival was a blessing.
On our 7th Day of Christmas we learn all about Sofia, a 6 year old who was diagnosed with epilepsy and leukodystrophy in 2020.
Sofia is a 6-year-old girl who developed typically and mostly on track except for a minor speech delay until 3.5 years old. Sofia had her first seizure a few months before her 4th birthday in 2019. Her seizure was a grand mal seizure and she had two more in the ambulance ride to the hospital. Because she had multiple seizures, she was diagnosed with epilepsy that year. We started her on a medication and assumed they would be controlled and she would carry on as a typical little girl to grow and develop “normally”. Unfortunately, that medication didn’t work which began a trial of several other medications and ultimately the addition of the medical ketogenic diet for epilepsy to get her seizures well controlled.
On our 6th Day of Christmas, Fiona Willis tells us all about her Mum, Bronwen’s, ongoing journey.
Mum’s issues started about 7 years ago, when she was in her late 40s. She began having problems with communication, and just generally doing things that were out of character for her. I went along to several mental health appointments with her, but it was all put down to depression and anxiety, so I tried to support her the best I could in the years that followed.