A family’s quest to find a solution to their tiny daughter’s rare medical condition is the focus of a new ITV1 documentary, The Real Thumbelina.
The film follows four-year-old Amelie Gledhill as she is about to start school near her home in Halifax. But she’s no bigger than a baby, and has to have her school uniform specially made to fit her tiny frame. She was born with Russell Silver Syndrome, a genetic disorder which limits her growth.
Her parents, Anne and Jon, are deeply worried about what the future holds for Amelie. This documentary from Wild Pictures, producers of Strangeways, Wormwood Scrubs and Fraud Squad, follows the family as they desperately seek ways to help Amelie to live a normal life.
Anne Gledhill says: “I do worry about her being bullied. How would she drive a car when she’s older? Will she meet somebody that she’s happy with, a partner in life?
“Nobody’s ever said how tall we can expect her to get to. Nobody’s ever been able to give us that insight into the future.”
Amelie was born at 37 weeks weighing five pounds nine ounces. Her parents were initially told she was absolutely fine.
“She looked a bit different because her head appeared so much bigger but actually her head is the normal size but she was just so tiny, “ Anne explains.
“But then everybody kept saying, ‘She’ll be fine. She’s small, she’ll catch up.’ And we did have to go through that a lot before people actually realized, no, actually she’s not going to catch up and this is how she is.
“Essentially she’s like a baby, she’s still in her nappies, we still brush her teeth for her, we wash her, we dress her. She tries to do it by herself but she just can’t.”
“We’ve tried so hard not to wrap her up in cotton wool right from the word go because I don’t think it would do her any good. But there are times even now where children, and I don’t think they mean to be malicious, but when she’s standing with her walking frame and they try to help her and push her and she falls over and she’ll get up and look a bit forlorn and my heart just goes.”
Amelie’s condition comes with a wide range of medical problems, and she’s constantly in and out of hospital. She has eating problems, which is common in children with the Syndrome, and she has to be fed by a tube into her stomach 20 hours a day to ensure she receives enough calories and nutrition.
Amelie also has spinal scoliosis, a curve in her spine which can seriously complicate medical treatment. It also means she can’t have hormone treatment to help her growth.
Frustrated with the lack of progress, Anne and Jon decide to take Amelie to America to meet Dr Madeline Harbison, the world’s leading specialist in Russell Silver Syndrome.
The documentary captures their meeting with Dr Harbison who identifies another problem for Amelie.
The family also attend an international event for children like Amelie, organised by a charity called The Magic Foundation. The cameras follow Amelie having fun with children who are just the same as her.
Anne explains: “We’ve been told she’s got another condition on top of Russell Silver Syndrome, and yesterday I was a bit shocked and I just thought I need to find out more information.
“But tonight after seeing them all have such a great time, I just think, ‘Oh, she can deal with it,’ and she’s getting on with it.”
But after the visit to the States, and meeting a teenager who has been successfully treated by Dr Harbison, Amelie’s family now hope to treat her with growth hormone, even though it will mean she has to undergo spinal surgery.
Anne says:
“It would be upsetting for us obviously if we put her through all that and the growth hormone didn’t work. But we’ve had so much positive feedback about growth hormone, so I think we have no choice but to give it a try, definitely.”
Emma and Ian Mitchell from Pontefract are also considering synthetic hormone treatment to boost the growth of their six year old daughter Ollie. But it would mean daily injections and Ollie is terrified of needles.
Emma says:
“She’s terrified of needles so to put her through that every single day and they say she might not even grow any more. She might have a rapid growth or nothing. I think it’s one of the biggest decisions we’d ever have to make.
“But then again, I think if we decided not to do it and she ended up stopping growing at something like ten, and really, really tiny still then I’d feel really, really guilty that we’d not given it a try.”
Emma and Ian take their daughter to see Dr Richard Stanhope, one of Britain’s few specialists in Russell Silver Syndrome.
He tells them: “The available evidence that we do have that is if you have long term treatment in Russell Silver Syndrome you can improve final height by several inches. And you’d see a very dramatic effect with growth hormone treatment. And you should be able to achieve a height in the region of 5’1 to 5’2.”
Emma meets 37 year old Zillah Clift from East Sussex, who was also born with Russell Silver Syndrome, and reached a final height of four feet two, to see how she has coped.
Zillah had childhood spinal problems and wasn’t able to have growth hormones. But she didn’t allow it to stop her doing gymnastics.
“I started gymnastics when I was four and won a couple of golds and a silver. I did all the acrobatics and contortioning, loads of shows and stuff. There’s a scary picture of me as a cat.
“All the doctors told me not to do it, and probably in hindsight maybe I shouldn’t have. But I could have reached the state I am now having not done any of that, and thought, ‘What have I done with my life.’ At least now I can look back and think, ‘Well I did that,’ and I’m glad I did.”
Zillah has been married to Simon, who’s six foot two, for eight years, after meeting in a club in Crowborough.
“He walked through the door and I thought, ‘He’s alright.’ He had a really nice smile, kind eyes. Dare I say it, quite a nice back side. As he walked across the room to the bar, I thought, ‘Mmm, he’s alright.’
“People refer to us as Pooh and piglet; like the figurine where Pooh’s up here and he’s holding Piglet’s hand.
Zillah tells Ollie’s mum Emma candidly that she would not have had hormone treatment to make her taller.
“If I had been offered hormone treatment, what would I want to change? I don’t think I would. I’m quite happy being me.
“I wouldn’t want to change me at all. It’s never held me back. When you’re 4 feet 3, 2, why be 4 feet 5? Why be 4 feet 6? Would you rather your child blended in or are you happy for her to be just who she is?”
Emma and Ian agonise over what to do for the best for their daughter after hearing from Dr Stanhope and Zillah Clift.
Emma says: “We’ve thought about it hard. We’ve to-ed and fro-ed as to whether we’re going do it or not, and we’ve decided that, yes, we’re going to go for it. I want to give her the opportunity to live a totally normal life. I’m dreading having to inject her, but I just think that it’s worth trying. If there’s no harm in trying, other than the needle part of it, it’s worth it. If it don’t work, it don’t work but hopefully Ollie’s one it works on.”
The Real Thumbelina is produced by Wild Pictures. The producer and director is Barnaby Peel and the executive producers are Paul Hamann and Emma Goddard.
Barnaby Peel says:
“This documentary felt an important one to make as Russell Silver Syndrome is such a little known condition. Many of the families we came across during our research had really struggled to find information and work out how to deal with the condition. I was privileged to be able to spend time filming several families who kindly agreed to let our cameras into their lives as they face the challenges of Russell Silver Syndrome”.
