The Chron takes a closer look at the work of a new support group for families affected by dwarfism
Actor Warwick Davis visits Pen Green Children's Centre, Corby, where the support group Little People UK is holding a weekend workshop and other events. The organisation has been created to help those affected by dwarfism. Pictured are founders (L-R): Warwick & Sam Davis, Fiona Reilly, Joanne Armstrong & Chris Brenchley.
STILL giggling infectiously, Charlie Moule crawled out of a large cardboard box where she had been playing hide and seek, before graciously submitting to being measured by her mother.
A moment with the tape measure later - which was followed by the dutiful measuring of teddy bear Rosie - and the verdict of Charlie’s height was delivered: 2ft 11 ins.
At six years old, Charlie is already shorter than most children her age, and 39-year-old mum Anne confessed that the height of her little girl is not expected to increase much more throughout her life.
Because, at six weeks old, the Daventry youngster was diagnosed with achondroplasia, a bone growth disorder which is one of the most common forms of dwarfism.
Anne, who spoke to the Chron this week to support the recent launch of the national group Little People UK, recalled: “I did not know I was expecting a child with additional needs.
“The health visitor noticed her head was growing too much in circumference and said it was suspected hydrocephalus, water on the brain.
“Then we were at Northampton General Hospital and the doctor kept looking at her hands.
“Then the doctor came back with all these different people. Looking back, I can see she was tiny for so long, she wouldn’t get any longer.
“I felt very alone because I thought ‘I can’t lose my daughter.’ She was going in for hydrocephalus and that can be quite dangerous and I said to my husband, we waited so long to have her.
“Then we had to wait for the blood tests to come back and they eventually came back and once we got through the initial checks it wasn’t too bad. There is so much research that we can do.
“Once we got over that initial shock, we just got on with it. I just thought it will be cheaper in clothes. She still has clothes now from two to three years ago.”
Charlie may be short, but her personality certainly fills a room. During our hour-long visit to the family’s Northamptonshire home, the youngster had everyone laughing as she extracted a surprising amount of joy out of climbing in and out of a cardboard box left over from a newly unwrapped desk chair.
She seized photographer Kirsty’s camera and asked questions about it, before trying a few of her own snaps. She also questioned me as to the exact source of the sparkly necklace and glittery white scarf I was wearing.
Charlie’s bubbly personality belies the medical ordeals she has already been through during her life and Anne says she has lost count of the number of operations and procedures her daughter had undergone at John Radcliffe Hospital in Oxford.
Although these are not always automatically present with dwarfism, her associated medical conditions include hydrocephalus, scoliosis (curvature of the spine), sleep apnoea and chiari malformation; a structural problem which affects the cerebellum, the part of the brain which controls balance.
Anne said: “It means she has pins and needles in her hands and feet, she has a lot of severe backaches and she is tripping up all the time.”
She added: “The hydrocephalus was quite bad and in between the brain and skull there is a kind of shock absorber. She did not have any of that, so her brain was hitting her skull. Her headaches were heartbreaking and it took them a long time to realise there was something going on in there. Then they had to take the top of her head off and rebuild it. That was eight or nine months ago.”
This week is a tense time for the family as Charlie is due to have yet another operation, this time for chiari malformation. Anne has been told that during the procedure there is a very high chance that Charlie could suffer a stroke; yet another medical hurdle the family is gearing itself up to facing.
One of the main reasons why so many families are getting behind Star Wars actor Warwick Davis’ Little People UK support and information group, is there is still so much public misunderstanding and fear attached to dwarfism.
Many find that quite often people do not know how to even refer to the condition.
Anne said: “We do get a lot of ‘isn’t she sweet?’ comments. One word we don’t like is midget, it is a horrible word, we would prefer dwarfism or even pint-sized. Vertically challenged is another one.”
Now at primary school, Charlie focuses simply on getting on with her life, and finds she has the support of her young friends.
Anne said: “My friend’s little girl, if she sees someone staring at her now, will ask ‘what are you looking at?’ and that makes them look away.
“People say to me ‘she is so pretty’ and she is pretty, she is my daughter.”
Sharing information and stamping out ignorance
COPING with dwarfism can be a lonely experience for those families who do not know of anyone else with the condition.
But a new group called Little People UK promises to be another avenue in which those affected can come together to support each other and share information about a condition which is still so widely misunderstood.
The national group was launched in Northamptonshire last week by Star Wars and Harry Potter actor Warwick Davis as well as his wife Sam and a team including Fiona and Jerry Reilly, Chris Brenchley, Kirsty Fowler and Joanne Armstrong.
All of the group’s founders have either been affected by dwarfism themselves or have children with the condition.
Joanne, from Corby, has a six-year-old daughter called Hope, who has achondroplasia.
Joanne said: “We all started talking to each other seriously about setting up Little People UK, everyone who had these ideas for years started talking about it together.
“In the UK groups we have people from Scotland, Devon and Kent, from all four corners.
“There is a one in 25,000 chance you will have a baby with dwarfism, but you might not know anyone else with a child with dwarfism. One in 25,000 is quite high, but not that common really.
“We will have meetings through the country, we have a Facebook page to support people and will have a 24-hour phone line; we are looking to get that up and running, and we will have a website.
“We will also be doing scholarships for people with dwarfism to continue in further education.”
Another major goal of the group is to educate and make people more aware that dwarfism can happen to anyone regardless of whether it is already in the family.
Joanne said: “We have people with dwarfism who have been picked on and hurt but people need to understand that this could have been their child.”
The members-only Facebook group, called Little People UK, has already attracted more than 200 subscribers. To access the social network visit www.facebook.com/groups/312922142071856 and click ‘ask to join group’.
Facts About Dwarfism
Dwarfism is a general term relating to shortness (adults less than 4ft 10 ins) caused by specific medical conditions.
There are believed to be about 200 conditions which can lead to dwarfism, but one of the most common is achondroplasia, which affects bone growth, resulting in shortness of limbs.
The average height for adults with achondroplasia is about 4 ft for men and women. Other characteristics can include a prominent forehead, bowed legs, a protruding jaw or a flat area between the eyes.
Achondroplasia affects one in between 25,000 and 40,000 children and is thought to be caused by a chemical change within a single gene.
Last week Star Wars, Harry Potter and Life’s Too Short actor Warwick Davis attended the Pen Green Children’s Centre in Corby, Northamptonshire to launch Little People UK, with the aim of allowing people to share knowledge and experiences of dwarfism.
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