TINA ROBINS meets a couple who describe the love and devotion they have for their son Ted, who was born with a devastating genetic condition

FOR someone with all the odds stacked against him, young Ted Grove-Welsh is blessed with an amazing smile.

His brilliant grin is the only movement that he can control. Yet it has a huge capacity to inspire others.

Ted, seven, was born with Aromatic Amino Acid Decarboxylase Deficiency – a devastating genetic condition that has robbed him of the ability to sit, stand or walk.

It is a condition so rare that it affects just 100 children in the whole world and only six in the UK.

His parents Zoe and Sven have made it their aim in life to ensure he and his brother and sister have as magical a childhood as possible, but it is a challenge.

When Ted was delivered he suffered breathing difficulties and spent an hour in the special care baby unit. He suffered reflux – bringing up his feed – so badly his skin was burned and at 14 weeks he weighed only 14lbs.

Then at six months old, just as he was beginning to be able to sit, he contracted pneumonia. When he finally left hospital after treatment it was back to being almost a newborn.

Zoe was already concerned that he wasn’t reaching his milestones. “He never reached for toys so I knew as a mother that something wasn’t quite right.”

He was put through a battery of tests as paediatricians tried to discover what he had. MRI scans, CT scans, blood tests – none of them provided the answer.

It wasn’t until a lumbar puncture was carried out at 17 months that they began to realise just what was wrong with Ted.

Initially the couple were told Ted had a condition called Spinal Muscular Atrophy type one. It was devastating news because most babies die within 18 months of diagnosis.

“It was horrific. We lived with that for a couple of weeks,” said Zoe. “You have this tiny baby in your arms, who is so poorly and you are told you can lose him.”

Even when the real diagnosis came there was confusion. “We were sent down to the pharmacy with a prescription thinking: ‘This is going to fix things.’

“When you get home you realise there is no drug that’s going to fix this.”

As the consultants in Oxford tried to work out Ted’s medication, Zoe researched the condition and found Great Ormond Street was a specialist hospital. Then she tackled Ted’s doctors.

“I asked for a referral and I refused to leave the room until they agreed,” she said.

She won and finally Ted’s care was put into the hands of Manju Kurian, a world renowned expert who is working on gene therapy that could help him and other patients in the future.

His parents also made contact with the AADC Research Trust, which supports families, provides information and funds research into treatments.

In the early dark days support was particularly vital. “Once we got to Great Ormond Street it was easier because we knew we were with experts and that really helped,” said Zoe.

As the years have passed they have accepted the unexpected direction life has forced them to take. Other couples they know have not been able to weather the extra pressure a child with such heavy special needs brings. But they have become a team.

“You do feel very alone, very isolated,” said Sven. “You go through a whole rollercoaster and you think: ‘How do I deal with this?’”

Zoe admitted: “There have been times when we have asked why. But he is our boy, he is the most determined, amazing little man. It is just a different journey in life and you meet some amazing people.”

Apart from family, friends and carers, one of the biggest encouragements for them is the attitude of Ted’s brother Miles and sister Emelia(CORR).

Aged 11, Miles is mature beyond his years. Having dealt with the blow of realising that Ted was never going to be the little brother he had imaged, he accepts the hand he has been dealt and loves him all the same.

“He is inspirational,” said Zoe.

Emelia, 22 months, knows no different and helping Ted, whether it is getting him his favourite book or watching Mr Tumble with him, comes as second nature.

When she was born Miles was delighted. “He wanted a sister because he did not want Ted to feel replaced.”

At the same time Sven and Zoe don’t want them to miss out on normal childhood. So when Ted goes to respite care they take the other two out to do the kind of family activities he cannot join in.

“We cherish time with them to be able to give them 100 per cent of our attention,” said Zoe.

The family has also had help from local support group Koalas, friends and family.

“We have had some very special friends who have supported us through it.” But she admitted it has been difficult to see other children of Ted’s age.

All three children were planned. When Zoe was 11 weeks pregnant with Emelia she underwent chorionic villus sampling, where cells are taken from the placenta to test for genetic conditions.

There was a risk of miscarriage but it was vital to know what they were facing. The first test did not work because not enough cells had been taken. Then, after a tense three-week wait, they were told a healthy baby girl was on the way.

Neither Sven nor Zoe have had a full night’s sleep since Ted was born. Even if a respite carer is on hand to look after him in the night, they are still awake and can hear him.

Their day starts at 5am with Ted’s medication, although the chances are he is already awake. He has to have a cocktail of drugs just to allow his body to function. “If he did not have them he would be a floppy ragdoll.”

But said Sven: “Cognitively he has got it. He understands everything that is going on.”

Once medicated, he has to be washed and dressed. On a school day he is picked up by transport to Robert Le Kyng Primary.

Another round of medication follows when he returns. A chance to spend time with his brother and sister and then it is tea time. For Ted that means a feed through a line into his stomach.

At 9pm he is given his sleep medicine, at 10pm there is more medication and 11pm another pump feed. Often he wakes between 2am and 4am and shouts for Sven to read him stories.

Over the day they use up to 30 syringes, which have to be washed. About one and-a-half hours are spent preparing medication and feeds.

Sometimes the day goes well. Sometimes Ted’s body goes into crisis, causing him intense pain and wiping out any plans they might have made. All his parents can do is give him pain relief, attempt to comfort him to sleep and hope that tomorrow will be better.

Zoe said: “It is not the life we imagined when we got married, but we absolutely adore all three children and each other.”

At seven Ted is a very slight figure, but because he cannot hold himself up he is becoming increasingly difficult to carry as he grows older. His equipment, including his wheelchairs also need space to manoeuvre.

So his parents are raising money to adapt their home with an extension, a through floor lift and a special bath at a cost of around £20,000.

Anyone who wants to help can visit gofundme.com/TedsSmile or follow Teds Smile on Facebook.