Nine-year-old boy sings his big brother to sleep – and refuses to go to bed until he has comforted the 13-year-old who has a rare neurological disease
- Ellis Leadbeater, nine, comforts and sings to brother until he falls asleep at night
- Siblings from Middlesbrough, North Yorkshire, watch a movie together in bed
- Brother Alfie has Alexander disease which left him paralysed and with epilepsy
Heartwarming footage shows a nine-year-old boy singing to his older brother who suffers with a rare neurological condition to send him to sleep.
Alfie Leadbeater, 13, from Middlesbrough, North Yorkshire, suffers from Alexander disease, a disorder of the nervous system which has left him paralysed.
His brother, Ellis, nine, worries about Alfie every day and refuses to go to bed until he sings a song to his sibling.
Ellis Leadbeater, nine, sings to sleep his brother Alfie, 13, who suffers with a rare neurological disease
Alfie’s disease has caused him to lose the use of his legs and his hand coordination meaning he can’t walk and struggles to feed himself.
The condition has also left him with epilepsy and severe scoliosis, which has dislocated both hips and crushed his lung.
Their mother Debbie started recording the touching moments to share with friends and family, revealing how Alfie’s face lights up when Ellis asks if it’s time for a bedtime song – and responds with a big smile.
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She said: ‘Alfie was born with a white matter brain disorder – until the age of seven we didn’t actually have a diagnosis until a doctor in Amsterdam diagnosed him.
‘He was able to run around with other children and do most things a child of his age does, but heartbreakingly he started to deteriorate at five years old.
‘His legs got weaker and he started to use a walking frame, gradually he fully lost the use of his legs, then lost his hand coordination which meant he wasn’t able to feed himself or hold a cup.
Ellis wraps a comforting arm around his sibling and sings along to the soundtrack as they watch a movie
‘He totally lost all of his independence, which as a family was absolutely devastating. He loves being able to eat his favorite foods but that was also taken away from him.’
Alfie’s condition also had an impact on younger brother Ellis, who Debbie said insists on singing to Alfie so he has memories of them together when Alfie is no longer around to play with him.
What is Alexander disease?
Alexander disease is a rare disorder of the nervous system.
It is one of a group of disorders, called leukodystrophies, that involve the destruction of myelin.
Myelin is the fatty covering that insulates nerve fibers and promotes the rapid transmission of nerve impulses.
If myelin is not properly maintained, the transmission of nerve impulses could be disrupted.
Most cases of Alexander disease begin before age 2 and are described as the infantile form.
Signs and symptoms of the infantile form typically include an enlarged brain and head size (megalencephaly), seizures, stiffness in the arms and legs, intellectual disability and developmental delay.
She added: ‘His condition and deterioration has had a huge impact on Ellis in his education and also developed behaviors.
‘He worries about Alfie every single day and will not go to bed until he has sang to him as Ellis finds comfort in this.
‘They have a playlist of all their songs to sing together but their two all-time favorites are Ellie Goulding ‘How Long Will I Love You’ and John Legend ‘All Of Me’.
‘Alfie’s face lights up every night when Ellis says shall we have a bedtime song. He always responds with that amazing smile he has. Some nights if he isn’t too worn out he will try joining in with Ellis.
‘They both have an amazing bond, Alfie laughs his head off if Ellis is being mischievous and likes to watch him running around – they are best friends and forever brothers.
‘Ellis is the youngest of four boys and to take it upon himself to sing and entertain his big brother has totally amazed me.
‘When I see Ellis singing to Alfie every night my heart breaks a little more, after every single song I literally sob my heart out and each night it doesn’t get any easier, it honestly just gets harder.
‘These will be memories that will be forever cherished by us all as a family.
‘Alexander disease is a rare brain disorder which is likened with white matter brain disorders. I would love for more information and support groups to have been available for families like mine.’
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