Memphis Bilverstone.

The parents of a 22-month-old baby who died from an extremely rare genetic condition have shared their heartbreaking story.

Megan and Matt Bilverstone, of Watlington, were left devastated after their son Memphis died last month.

Little Memphis had 3-methylglutaconic aciduria type 7 – he was one of 30 people in the world to have been diagnosed with it. 

Following a normal pregnancy, Memphis was born at home and “smiled and laughed by the expected ages and was a very happy baby”, said Megan.

She said: “His brother was very advanced for his age and could basically hold his head from birth so we knew we couldn’t compare Memphis to him. 

“Memphis tried rolling from a few months and really tried his best but only ever managed it a couple of times. 

“He was never interested in toys which is what raised our concerns initially. He wasn’t interested in food at all. He showed no signs of sitting up and he was never able to hold his head up.”

In June last year, when Memphis was 11 months-old, his parents decided to take him to see a private physiotherapist who suspected cerebral palsy.

Although tests ruled out cerebral palsy, they revealed Memphis had a small pituitary gland which suggested hormone-related issues.

But Memphis started losing weight and started suffering from seizures and was admitted to intensive care at Addenbrooke’s Hospital in Cambridge. 

“He was never the same after this seizure,” said Megan. “But it meant that genetics were now on the case to find out what could possibly be going on with him.”

A few days after Christmas Memphis was diagnosed with 3-methylglutaconic aciduria type 7 – symptoms include “failure to thrive”, global development delay and dystonia.

“We were in and out of hospital constantly from infections as if he had a fever, he needed to be in hospital within the hour to receive IV antibiotics. He had constant hospital appointments in King’s Lynn and Addenbrooke’s,” said Megan.

In April he suffered a second big seizure and his health rapidly deteriorated.

“His little body just couldn’t withstand all the drugs and infections thrown at it,” said Megan. 

The couple made the heartbreaking decision to move to The Nook hospice (EACH) on May 27, where Memphis died just days later.

Megan added the family wanted to express their gratitude after members of the community raised around £3,000 which will pay for an urn, keepsakes and a family break.

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