Fundraising News
Fundraiser for Brentwood baby with ultra-rare genetic condition
08 Sep 2026
A Brentwood family is appealing for help fundraising for their daughter who has a condition caused by a gene change believed to affect just two other people worldwide.
Lyra Patel, eight months old, was diagnosed with seizures at just 3 months old after being admitted to hospital with clusters of increasingly severe seizures. Following emergency investigations and treatment, she was later diagnosed with infantile spasms after an EEG at Great Ormond Street Hospital. Infantile spasms are the most catastrophic seizure type in babies and can significantly impact brain development and may lead to lifelong neurological and physical disabilities. Since the onset of her seizures and spasms, Lyra has experienced developmental regression. She lost previously developed interaction skills, including smiling, eye contact, tracking objects, and playful movement.
Lyra lives with her mum Natalie Taylor, 34, a teacher at St John’s in Billericay, and dad Taran Patel, 33, an architectural project manager. Natalie said: ‘I had a normal pregnancy and initially Lyra seemed liked a very normal baby. She breastfed well – she is still big for her age. But then she started to lose some of her developmental skills such as smiling and moving, and then started having seizures and then spasms.
‘Following genetic tests she was diagnosed with a rare gene change on the CLTC gene. Only two other people have been documented with Lyra’s exact gene change and very few people in the world have other changes on the CLTC gene. Our neurologist advised us that we cannot predict Lyra’s future but that she is likely to have lifelong disabilities."
Lyra's mum
"We are determined to give Lyra the best start in life and we hope that by sharing her story you may wish to support Lyra on her journey. Lyra is currently working hard at weekly private physio with Mini Wonders and our current goal is for Lyra to lift her head independently. She’s already getting stronger and making gains that we are so proud of!"
"Early intervention is crucial for Lyra’s development and physiotherapy will play a vital role in helping Lyra build strength, improve movement and head control, and support her overall development. Alongside physio we are hoping to buy specialised and adaptive equipment to support Lyra to sit, bathe, wean etc and we anticipate more equipment and additional therapy (for example occupational and conductive therapy) as well as home adaptations will be needed as she grows up."
"We don’t know exactly what the future hold for Lyra as there are so few children like her and little research. But we are determined to give Lyra the best start in life and expose her to every opportunity possible to support her.
If you would like to help, any donation, big or small, is greatly appreciated and please feel free to share Lyra’s fundraising page.’
Lyra's mum
Natalie’s mum Dawn Durrell-Fulton is holding a fundraising pilates class followed by cake sale on October 18 at Hutton Community Centre. The pilates class is already sold out, but all are welcome to come along and buy cakes from 2pm.
The family is being supported by children’s charity Tree of Hope, which helps families raise money for children and young people like Lyra for medical treatments and healthcare services not reasonably available to them through the NHS or social care. The charity provides fundraising guidance, campaign development, financial management, charity registration and emotional support from the Family Support team. Families like Lyra’s benefit from having the support, tools and resources to fundraise effectively as well as access to gift aid, corporate support while also providing donor reassurance.
"We wish Lyra and her family all the best with their fundraising activities. We are pleased to give them support in reaching their fundraising goals."
CEO
To donate to Lyra’s fund visit https://www.treeofhope.org.uk/get-involved/childrens-campaigns/supporting-lyra-s-journey
You can also follow her on Instagram @lyra_sjourney
