The heartbroken parents of a little Leeds girl diagnosed with a rare form of childhood dementia have pledged to make as many memories as possible for he -including seeing the ocean and Christmas lights, before she goes blind.
Connie Annakin, six, from Farsley, suffers daily seizures and is losing the ability to walk or talk, after she was diagnosed with Battens Disease three years ago. Her devastated parents Caroline and Rob were told most children diagnosed with the condition pass away between the ages of six and ten.
There is no cure for Connie's condition, but her parents were told of a revolutionary treatment that could halt the regression of most of her abilities, but it wasn’t available on the NHS.
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Caroline fought the ruling by The National Institute for Health and Care Excellence (NICE) and won, allowing Connie to have the enzyme treatment for five years, administered at hospital through a port in her brain twice a month. But travelling to treatments – or anywhere – was made difficult by the basic wheelchair Connie had, which was too small, didn’t support her head, or recline so she could sleep or keep her comfortable during seizures.
In desperation her family applied for an equipment grant to Newlife the Charity for Disabled Children, providing specialist equipment and support to disabled and terminally ill children. Now, thanks to Newlife, Connie has a safe and comfortable specialist buggy to attend medical appointments in and have as many visual experiences as possible, before her sight fades completely.
Caroline said: "he buggy Newlife helped provide has been life changing. The enzyme treatment is working well, and we are hopeful it will stop her developing further disabilities, but it can’t give her back what has been lost, so she needs the right specialist buggy to go anywhere safely. The treatment can’t halt her loss of sight either, as it can’t cross the blood-retina barrier, so having this buggy is vital to see as many different things, such as the ocean and Christmas lights.
“Connie can no longer tell the difference between day and night, so it’s imperative she can recline to be able to sleep whenever she needs to, as lack of sleep can trigger more seizures, but her old wheelchair couldn’t do this. Hospital visits for treatments were also really difficult with the old wheelchair– it was uncomfortable for Connie and wasn’t very secure, there was no head support and she would bounce in it as we went along. It was just awful.
“The tyres on the buggy can handle all terrains and the buggy even has weather proofing we can use – which her old wheelchair didn’t – which makes a huge difference. Now we can go anywhere we want and give her all those great experiences and live in the moment so we can make memories.
“Connie is currently having two seizures a day where she cries and screams, each lasting around four hours. We recently had to call the paramedics and when they saw her buggy they said it was perfect, as they didn’t know if any beds were available, and it meant she could safely rest while she waited. With this buggy we know she is safe wherever she is. What Newlife has done for us is amazing.”
Kamaljit Dulai, Newlife Child and Family Support Manager, said: “We are thrilled Connie now has the right equipment to meet all of her needs. Being safe, comfortable, secure, and supported will help her and her family have the best quality of life possible.
“Without Newlife thousands of disabled children, many of whom have reached crisis point, would be living in pain, unsafe, unable to do the things that we all take for granted and denied the opportunity to reach their potential, but we are committed to helping, and actively campaigning for, disabled children and their families to receive the equipment and support they need, whatever their situation.”
Newlife has been helping disabled and terminally ill children across the UK for more than 30 years, for more information on the charity click here.
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