'It's devastating': Golders Green mother speaks out about rare genetic disease
- Credit: Katie Morsbach
A Golders Green musician is raising awareness about a rare, incurable genetic disease.
Katie Morsbach and husband Tom were devastated when their first child Leia was diagnosed with mitochondrial disease at six months old.
Mitochondrial disease, or "mito", is a group of medical disorders caused by mutations in the organelles present in nearly every body cell.
It is believed that 1 in 200 babies in the UK are born with genetic changes that can cause the disease.
Mitochondria generate about 90% of the energy we need to live, according to UK mitochondrial disease charity the Lily Foundation.
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Katie, who is head of music at Alyth Synagogue in Temple Fortune, wants more people to know about the illness, as part of World Mitochondrial Disease Week (September 19-25).
She said: "It's so unknown that it took months to get a diagnosis for Leia.
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"When we finally got one, it was such a relief, as we'd been in limbo for so long.
"The diagnosis meant we could find a support network and get the help we needed."
The first-time mum, who is eight months pregnant with her second child, said Leia was constantly poorly when she was born.
"She was so miserable and in pain, but we didn't know what was wrong," Katie said.
"We kept finding new problems, including deafness and kidney failure, and building up a whole set of diagnoses, as the disease can affect any organ."
Doctors predict Leia could live to six years old, and Katie is grateful for the support her family has received.
She said: "It's devastating to hear your child has a limited life expectancy and might not survive.
"But the community rallied around us and made life so much easier."
She hailed the role of charities Camp Simcha and Noah's Ark Hospice, as well as Great Ormand Street Hospital, in providing help for Leia.
Members of Alyth Synagogue organised a food rota for the family when they were in and out of hospital.
"The synagogue clergy have also been amazing, and Rabbi Hannah Kingston would come and visit us in hospital," Katie said.
Confounding doctor's expectations, Leia is now smiling and babbling, and is attending a nursery for children with learning difficulties.
"It's incredibly isolating knowing your child has a profound disability, especially during Covid, but the more awareness we can raise about mitochondrial disease, the more children like Leia we can help," Katie said.
Find out more about Mitochondrial Disease Awareness Week here: www.mitoaction.org/join-the-cause/raise-your-voice/awareness-week/
Donations can be made to the Lily Foundation here: www.thelilyfoundation.org.uk/get-involved/donations/