01 May 2017
ALF helps with first steps on long journey for two-year-old Lennon
THE Aaron Lewis Foundation is delighted to have contributed towards the physiotherapy costs of a young boy with cerebral palsy in the hope it will contribute to him one day being able to walk.
Two-year-old Lennon Coady and twin sister Layla were born at 28 weeks gestation in July 2014 and are both delayed in all aspects of their development.
Parents Joel and Zara, both serving police officers, have since been fundraising hard for life-changing treatment for their children.
The ALF is unable to donate funds directly to another charity, and so has instead paid almost £1,500 for an initial assessment and a course of 18 physiotherapy sessions for Lennon.
The toddler needs the physio, which is not available on the NHS, before he can have selective dorsal rhizotomy (SDR) surgery in the US – an operation that could see him start walking.
Zara, 33, said: “The arrival of our twins wasn’t the joyous occasion most families experience with their first children; it was the start of an emotional rollercoaster and where our babies’ fight for survival would begin.”
The twins weighed 2.1lb and 3lb when they were born and remained in the neo-natal intensive care unit at Basildon Hospital for five weeks. Lennon would stay in hospital for two more weeks and Layla another five due to her experiencing severe feeding and breathing difficulties.
Met Police detective Zara added: “Both had regular scans and we were advised quite early on that both Lennon and Layla had developed bleeds to their brains. We were told this was a common feature of premature births and that the effects would not be shown until further down the line.”
Since their birth, the twins have been regular hospital visitors for scans, physio, development assessments, neurodisability assessments, audiology and orthotics.
Layla has been diagnosed with global development delay and an MRI confirmed she has periventricular leukomalacia (PVL) – damage to the white matter in her brain. She is also suspected to have mild cerebral palsy affecting the left side of her body. She is able to sit, crawl and pull to stand up, but is unable to walk or stand independently.
Lennon’s consultant has stated that he has cerebral palsy affecting his lower limbs – spastic diplegia. He is able to take steps on a flat surface and in a controlled environment, either at home or at nursery. But experts at Great Ormond Street have said he may benefit from botox injections to his legs along with intensive physiotherapy with the aim of removing the spasticity from his legs.
GOSH doctors also recommended the SDR operation, which will see the nerves in Lennon’s spine severed to release the muscles in his legs. The operation, which costs around £30,000, is not available or funded by the NHS. Lennon would also need daily physio for at least six months, costing a minimum of £30,000.
Zara added: “The operation and therapy both before and after will aim to increase his mobility, to see him walk independently outside, up and down stairs and most importantly to remove pain of the muscle contractures caused by the spasticity.
She and Joel believe the best option is to travel to America to have the operation as soon as possible, rather than waiting for it to become available in the UK. Layla is not a suitable candidate for the operation, but her parents hope with her own therapy and treatment programme, she will be able to walk one day.
The family live in Benfleet, Essex, and attend many of the twins’ NHS therapy appointments at the Lighthouse children’s development centre in Eastwood.
Yorkshire-born Joel, 37, a sergeant in The Met, added: “It has been very difficult and challenging. But the one thing that has come through from all this is how nice people can be. Some of those who have helped don’t know us and just saw our campaign on social media. It’s fantastic.”
Aaron Lewis Foundation trustee Helen Lewis said: “It is terribly sad that this family have to seek private treatment for their children. Our contribution was thought to be the best way the ALF could help them at this time and we are delighted to do so.”
You can find out more about Joel and Zara’s fundraising campaign at facebook.com/littlelegscoady