After her older brother Ollie was diagnosed with Batten disease in 2015, we decided to get two year old Amelia tested. We knew she had a 25% chance of also having the disease. For the second time, our world fell apart.Donate now
After a complicated pregnancy, and nearly losing her during labour, Amelia was the final piece to our family. She was perfect in every way. But in 2015, we learnt our beautiful princess also had Batten disease — an incurable, fatal disease with a life expectancy of six to twelve years.
To look at Amelia, you would never know there was anything wrong. She had only just turned two, she’d been hitting all her milestones.
Batten disease prevents children from creating an enzyme that stops waste from building up in the brain. Like other sufferers, children like Amelia with Batten disease lose their ability to walk, become blind and unable to communicate, as well as suffering from uncontrollable seizures and movement disorders.
Amelia is still as energetic and fun-loving as ever, but her brothers will have to witness their baby sister gradually deteriorate in front of their eyes.
Now, we spend our time raising as much awareness of Batten disease as possible whilst creating magical memories as a family.
When our third son, Ollie, received his diagnosis, our whole world fell apart. Soon after, we began our research. We found specialists in London as well as the amazing support system at the BDFA.
Exactly four weeks later, we travelled to London to meet the specialist. There, we found out there was a 25% chance Amelia could also have the disease. After a long discussion, we decided to get Amelia tested.
A few weeks later, we received a call from the genetics clinic asking us to come in and test our two older boys. But on arrival, we were asked to leave the boys in the waiting room.
Instead, we were told our youngest child Amelia also had Batten disease. She had only just turned two.
Right now, Batten disease has no cure — it is always fatal.
We fought for compassionate use of a drug that shows positive signs of slowing down Batten disease. Now, Ameila and her brother Ollie are receiving groundbreaking treatment at Great Ormond Street Hospital. This treatment is keeping them stable and slowing down their deterioration. Ameila’s diagnosis came relatively early, she still has time to benefit from the results. It breaks our hearts that this treatment might have come too late for Ollie.
This is a list of things Amelia would love to enjoy while she still can.
Amelia loves anything to do with Disney and princesses, so any magical experiences like this would be incredible.
The great outdoors
Amelia loves playing outdoors and swimming. Any outdoor adventure would be fun for her and the rest of the family.
Amelia is obsessed with birthdays and parties, so it would be lovely to be able to throw her a special party.
A princess makeover
Amelia loves having her hair and nails done. She’s always stealing her mummy’s makeup, so a princess makeover would make her day.
An animal adventure
Amelia absolutely loves all animals and she would really enjoy spending a day trip to a zoo or a farm with her family.
Amelia’s favourite time of year is Christmas, she loves the magic of it. It would be wonderful for Amelia to meet the real Father Christmas.
We’re determined to give Ollie and Amelia as many magical experiences as we possibly can. Ollie and Amelia’s dad is self-employed so we’d love to raise enough money to allow him to share these precious experiences with the family.