David Fitzpatrick – the CdLS Foundation’s medical director – has told parents never to give up hope about their child walking – and one uplifting story we heard from the CdLS conference was that of UK trustee
Angela Pengelly’s lovely son Kieran, who at the age of 13 has started to walk.

“Kieran was diagnosed with CdLS at three days old,” says Angela. “He was born at Southampton hospital which has a regional paediatric unit and is a teaching hospital, so in that way we were lucky. But what was meant to be the happiest day of my life turned into a nightmare.”

Kieran was born with a claw
hand and a cleft pallet, so instantly it was obvious there was a problem, but then the doctors gave Angela a long list of further problems including; small feet; thin ribs; chest problems; reflux; and a join at the eyebrows - a classic sign of CdLS. And the possibility he would never walk.

“I started to think he would never come home, but he was a little fighter and was soon at home with us. He sat up at the age of two and was sort of crawling but he has never walked….until two weeks ago.

“He attends a great PMLD school called Rosewood in Southampton. They have 30 kids all with severe disabilities, but they have fantastic teachers and specialists that constantly try and improve the children’s needs each day. One thing they did with Kieran is hold him up and try and walk with hi
then gently let go of his hand, in the first week he was able to walk a few steps to a table, then suddenly a week later he walked Brave Katie Locke loses her fight Walking miracle out of the classroom door, alone!

The teachers at Rosewood rganised that when Angela picked him up at the school he would be walking down the corridor. “That was a very emotional moment for all of us, but it was tears of joy. Kieran has had a walker since he was six years old but he could never walk alone. But I never disbelieved it wouldn’t ever happen. You must never give up.”

Angela has attended many of the global CdLS conferences which has been a huge help and support to them. Angela says: “We’re all in the same boat at the conferences and you realise you are not alone. It’s fantastic to meet other families and share stories. Of course the SAC information is very important. Just one small piece of advice or information can change you. At one conference I heard that a person with CdLS, their arms never straighten, which I hadn’t known. At another one at Treetops school in Essex I heard from a specialist who was talking about nasal polops and what can be done about it. I realised that is what Kieran was suffering so I was able to address it.”

As many of the specialists attending Brighton also go to the other conferences they too see a change in Kieran and other individuals. “David Fitzpatrick said of Kieran walking that for his age range it was the oldest he had seen a child start to walk. Kieran suffers gastric problems and I find it hard to imagine him eating independently, but walking I could imagine. Never give up hope. Kieran’s world is now opening up,” says Angela.

At the moment Kieran is able to walk for up to ten minutes, with the help of being picked up to walk. The next stage is for his physiotherapists to get him to sit up and stand up and start walking. “I believe this will happen,” smiles Angela.

ED PENGELLY


We are sorry to report that Edmund Pengelly – father to Kieran and husband to Angela – died suddenly at their home in Hampshire on November 5th. Ed, aged 53, was a great supporter of the CdLS Foundation and with Trustee Angela, was always present at family weekends and willing to help other families at the events.

He worked for the Royal Mail, and in his spare time was chairman of governors of a special needs school where Kieran attended. Friends and Trustees from the CdLS Foundation family attended the packed funeral, and donations in Ed’s memory are still coming in to the Foundation office.
Foundation chairman Alan Peaford said: “Ed was a really special person. He was always great fun at our events and was very supportive. It was so sudden that it was a complete shock to everybody and our thoughts and
deepest condolences are with Angela and Kieran. He will be greatly missed.”