christmas Archives

Alex TLC Pet Calendar

March 2022

Send us your pet photos We’ve got an exciting new fundraising idea and need you to get involved to make it happen! Later this year, we plan to launch a 2023 Pet Calendar to help to raise vital funds for Alex TLC. We are currently running a competition and would love for you to enter photos of your pets. In April we will pick the winners and announce which of our furry friends will feature. It is completely free to enter! However, as the purpose of the calendar is to raise money, we do hope that the owners of the pets we feature will purchase a calendar at £10 each, which will enable us to raise approximately £4 from each one. Please send your pictures to marlene@alextlc.org to enter.

12 Days of Christmas – Day 12

December 2021

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.

12 Days of Christmas – Day 11

December 2021

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.

12 Days of Christmas – Day 9

December 2021

On our 9th Day of Christmas, our Support Services Manager, Karen Harrison, gives us an insight into her family’s Christmas. My identical twin sons, Cameron, and Alexander, were diagnosed with childhood onset cerebral adrenoleukodystrophy (ALD) in 2002, up until then we had just been a normal family enjoying life…

12 Days of Christmas – Day 8

December 2021

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.

12 Days of Christmas – Day 7

December 2021

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.