MUM HAILS CAMP SIMCHA’S ‘AMAZING’ AID
AT just six months old, Leia Morsbach was diagnosed with a rare and progressive mitochondrial disease (mitochondria are structures within cells that convert the energy from food into a form that cells can use). She is one of only about 50 children in the world with the condition.
The diagnosis “was pretty much the worst day of my life”, says her mother Katie. “Being told your child might only have a very short life – I can’t even describe the pain.
“Leia’s condition causes seizures, affects her brain and her muscles. She has hearing loss and cannot sit or crawl. She also has stage three chronic kidney disease and will need a transplant or dialysis in a few years.”
A year on from the diagnosis, Leia is a happy, cheeky little girl, “a fighter” in the
words of her mother.
The Morsbachs live in Barnet but their family is scattered around the country and beyond, making support difficult.
But after speaking to Camp Simcha, “we felt there was a lifeline for us. Just having our family liaison officer Mandy at the other end of the phone has been a huge support. Camp Simcha also helped us get some counselling, which was amazing.
“When Leia was really little, the only way she would sleep was if one of us had a hand on her chest. It was really difficult, especially in hospital because she was in a cot and linked up to monitors.
“Mandy found this thing called Zaky Hands — beanbag hands that are weighted and you can put them on children to comfort them. Leia slept with them and it meant we could actually have a night’s sleep too.”
Being part of the Camp Simcha community has also benefited the family.
“During lockdown we have been really isolated. One of the things Camp Simcha has done is arrange get-togethers and activities over Zoom with other parents.
“I do an art group, which I love. And talking to other mothers who have gone through similar experiences has been a huge help.
“Without Camp Simcha in our lives, we would have felt really alone.”