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Tributes to 'mighty Memphis' from King's Lynn who had rare condition that affects only 30 others in the world



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A family has paid tribute to their baby boy after he died of a rare condition that affects only 30 other people worldwide.

Memphis Bilverstone 22 months, of Lynn, was described as a "happy, smiley" boy by his parents Matt and Meg Bilverstone.

Memphis was diagnosed with a rare condition by doctors called 3-Methyglutaconic aciduria type 7 also known as MGCA7 after he was taken in for tests after health professionals suspected cerebal palsy.

Mighty Memphis was described as a 'happy' boy by his parents and suffered from a rare condition that only affects 30 others in the world (57450132)
Mighty Memphis was described as a 'happy' boy by his parents and suffered from a rare condition that only affects 30 others in the world (57450132)
Mighty Memphis was described as a 'happy' boy by his parents and suffered from a rare condition that only affects 30 others in the world (57450138)
Mighty Memphis was described as a 'happy' boy by his parents and suffered from a rare condition that only affects 30 others in the world (57450138)

MGCA7 is characterised by various movement abnormalities and delayed psychomotor development Other common variable features include cataracts, seizures, recurrent infections due to neutropenia, and brain imaging abnormalities.

The condition is extremely rare and is said to affect less than one in 1million people across the globe.

Matt Bilverstone, Memphis' father said: "The birth was fine and happened at home, we were told he had a growth restriction but to breastfeed as much as possible and he will catch up.

"We couldn't really compare Memphis to his brother, Mylo, as he was advanced for his age and could hold his head up from birth. Memphis smiled and laughed at the expected ages, but he tried rolling at a few months old but only really managed to do it a few times."

Mighty Memphis was described as a 'happy' boy by his parents and suffered from a rare condition that only affects 30 others in the world (57450141)
Mighty Memphis was described as a 'happy' boy by his parents and suffered from a rare condition that only affects 30 others in the world (57450141)
Mighty Memphis was described as a 'happy' boy by his parents and suffered from a rare condition that only affects 30 others in the world (57450124)
Mighty Memphis was described as a 'happy' boy by his parents and suffered from a rare condition that only affects 30 others in the world (57450124)

The Bilverstone family started to become concerned when their son wasn't interested in playing with toys and food, he had shown no signs of sitting up and couldn't hold his head up.

In June of last year, when Memphis was 11 months old, the family decided to take him to a private physio for help, and the doctor, suspecting cerebral palsy, advised the family to take him to a paediatrician.

After an MRI scan it was revealed that Memphis had a small pituitary gland, which ruled out the possibility of cerebral palsy.

Mr Bilverstone said: "In October of that year he had a nasogastric tube fitted as he was at a low centile for his weight and we had to feed him numerous times throughout the day and night. After several treatments that's when he had his first seizure, and several attempts at using different medication didn't stop them from happening. He was then sent to a special care unit at Adenbrooke's Hospital in Cambridge."

Mighty Memphis was described as a 'happy' boy by his parents and suffered from a rare condition that only affects 30 others in the world (57450127)
Mighty Memphis was described as a 'happy' boy by his parents and suffered from a rare condition that only affects 30 others in the world (57450127)
Mighty Memphis was described as a 'happy' boy by his parents and suffered from a rare condition that only affects 30 others in the world (57450135)
Mighty Memphis was described as a 'happy' boy by his parents and suffered from a rare condition that only affects 30 others in the world (57450135)

His father said that he was "never the same after that seizure", and two months later little Memphis was diagnosed with MGCA7.

After the diagnosis Memphis was in and out of hospital for treatment and had daily injections to stimulate his white blood cell production.

Mr Bilverstone said: "He would have phases every two weeks where he would whinge constantly and would have to be sedated and he was so tired because he was having so many seizures all of the time, he was so sensitive to touch and even cuddling was too much for him. Sometimes he would sleep for four days after these phases."

In April of this year Memphis suffered his second big seizure and from that moment on spent the last month of his life in hospital.

His father describes how his once smiley boy no longer grinned or giggled, but gave his last smile to his mother Meg on her birthday on May 20.

"It's like he knew, he made it clear he could no longer cope" said Mr Bilverstone, "His stats were perfect that week when we took him home, but on the Monday he went blue and lifeless and we had to call an ambulance. We made the decision to take our mighty Memphis into the Nook hospice after a week long stay at the hospital and ten days after his last smile he passed away peacefully in his mother's arms."

The Bilverstone family has raised £2,100 in honour of Memphis to donate please head to the fundraising page here.

The family are also raising awareness of MGCA7 on their Instagram page, which shares their story.

Some children who have MGCA7 don't suffer in the same way as Memphis and can live their lives with neutropenia. Neutropenia is a condition where you have a low number of white blood cells called neutrophils in your blood. When you have low levels of neutrophils in your blood, your immune system is weakened, making it harder for your body to fight infection.

Some however, have more severe cases of the condition.

Memphis was very much loved by his family and his older brother Mylo and will always be remembered as a "smiley boy" by his parents and those who loved him.



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