Trull family’s hopes for 14-month-old baby with rare condition (From Somerset County Gazette)

A FOURTEEN-month-old baby who can’t cry because of a condition that is baffling doctors is about to leave hospital to live at home for the first time.

Experts are unsure why Maddison Gill is unable to suck, swallow, gag or cough and they believe that what is wrong with her is so rare she could possibly be the only person in the world with the complaint.

She has been home with parents Gene Gill and Tamsin Whatley for the occasional day and overnight stay, but they hope she will leave hospital for good this month.

Maddison’s gran, Angie Whatley, who lives with the family in Trull, said: “Tamsin’s pregnancy and the birth were normal and no-one knew anything was wrong until they gave Maddison her bottle – she went blue and had to be resuscitated.

“Whatever went into her mouth caused her to choke and everything went down into her lungs, which collapsed.

“Her brain and muscles are OK, but the impulses from her brain to her muscles aren’t working right.

“She can’t control her muscles to pick things up and touch them.

“And she can’t cry – she just makes faces and whimpers.”

Maddison has already undergone a number of procedures during her short life, including a tracheostomy and a gastrostomy to assist her breathing and eating, and has had several bouts of pneumonia.

Mrs Whatley added: “The doctors haven’t seen the condition before.

“Maddison isn’t using muscles we’d use for things we do naturally – she’s using a completely different set of muscles, finding ways of doing things that come naturally to other babies.

“She doesn’t crawl and rolls from side to side instead. We’re not sure if she’ll walk or talk, although she might be able to communicate in some way.

“She copies things like blowing bubbles and kisses and throws her toys out of the pram like other babies.

“She sits up, but if she falls, she can’t put her hand out to stop herself.”

She will need around-the-clock care, with carers staying five nights a week.

The family moved from Bishops Lydeard to their Trull bungalow to be nearer Musgrove, but may have to move again to house all the equipment needed to keep Maddison alive, while Tamsin gave up her job as a nursery nurse to care for her daughter.

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