This is the heart-warming moment a young boy sings to sleep his older brother, who suffers from a rare neurological condition.
Alfie Leadbeater, 13, from Middlesbrough, UK, suffers from Alexander disease, a disorder of the nervous system.
The disease has caused Alfie to lose the use of his legs and his hand coordination – meaning he can’t feed himself.
He also has epilepsy and severe scoliosis, which has dislocated both hips and crushed his lung.
His brother, Ellis, aged nine, worries about Alfie every day and refuses to go to bed until he has sung a song as it comforts Ellis.
Mom Debbie Leadbeater 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.
She said: “Alfie was born with a white matter brain disorder – until the age of seven, we didn’t 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 lost the use of his legs, then lost his hand coordination, which meant he couldn’t feed himself or hold a cup.
“He lost all of his independence, which as a family was devastating. He loves being able to eat his favorite foods, but that was also taken away from him.”
Alfie’s condition also impacted 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.
She added: “His condition and deterioration have had a huge impact on Ellis in his education and also developed behaviors.
“He worries about Alfie every day and will not go to bed until he has sung to him, and Ellis finds comfort in this.
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“They have a playlist of all their songs to sing together, but their two all-time favorites are Ellie Goulding’s ‘How Long Will I Love You’ and John Legend’s ‘All Of Me.’
“Alfie’s face lights up every night when Ellis says shall we have a bedtime song. He always responds with that fantastic smile he has. Some nights, if he isn’t too worn out, he will try joining in with Ellis.
“They both have a fantastic 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 taking it upon himself to sing and entertain his big brother has 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 more challenging.
“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 to white matter brain disorders. I would love for more information and support groups to have been available for families like mine.”
