THE family of a baby with a rare medical condition are making a final fundraising push for vital treatment abroad.

A crowdfunder has already raised £17,763 for little Sacha Sutherland-Lucas, who is 19 months old.

But they have just five days left to hit their £22,000 target.

Sacha, from Brighton was diagnosed with 2q37 Deletion Syndrome in October.

This means he is likely to grow up with both physical and mental difficulties.

But parents Rob Lucas, 38, and wife Zoe Sutherland are fighting to give their son more cutting-edge therapy available in the US.

Rob, a publisher, said: “When Sacha was five months old, we knew something wasn’t right.

“He wouldn’t play or move normally as his arms and legs are limp.

“We took Sacha to get a physical assessment but he failed most of the tests.

“He underwent a series of examinations, brain scans, hearing tests and eventually a DNA test.”

The family believe that treatment can help Sacha.

Rob said: “If one intervenes in the right way, and early enough in a child’s development, it is possible to substantially improve prospects.

“Though the services of the cash-strapped NHS are invaluable, what is available to Sacha is too little and too infrequent to make a real difference.”

Five months ago, the couple received donations from a community-led fundraising campaign so Sacha could have therapy at the Neurological and Physical Abilitation Centre in Los Angeles.

Rob said: “He is now able to stand for the first time without support and is making his first attempts to speak.

“We are still fundraising so Sacha can continue to have this therapy, which cost £8,000 per time.

“In the near future, we plan to take Sacha to see specialists at the Parent Infant Clinic in London which costs about £10,000 per week.

“At the moment we are just focusing on LA.

“As Sacha gets older he may need to have one-to-one teaching at school.

“We are most worried about his speech as some children with this condition don’t speak ever.

“The first fundraising was extraordinary and it has been a very moving experience for us to find such warmth and support in the community.

“Sacha finds the world as a whole pretty funny, and has done since he was small. He was born with a distinctive shock of thick brown hair, and loves bashing a bongo and anything else musical.”

There have been at least 115 cases reported around the world of babies having this condition.

Most have weak muscle tone, intellectual disabilities and problems with their heart and kidneys.

Money raised for Sacha will also go towards intensive treatment under the Re:Start Programme at the Parent Infant Clinic.

Rob said: “If we manage to raise more than is needed to cover these programmes, this will be donated to the International Pre-Autistic Network to fund intensive interventions for other babies in similar situations.”

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