The family of a seven-year-old girl with severe disabilities is hoping to raise enough money to fund an operation in America for her to be able to walk by herself for the first time.
In the year following Sienna Houghton’s birth, her mum Tanya Fernandes realised there was something wrong and took her to the Lister Hospital in Stevenage for tests.
Tanya said: “To be in that sort situation, where we didn’t know what we were dealing with, was so scary.
“She cried constantly and was in and out of hospital being poked and prodded with needles. We always tried to explain to her that it was to help her – it was such an upsetting time for us all.
“The staff at the Lister really took care of Sienna and were very helpful especially as we were dealing with the unknown – the nurses were very attentive – Sienna would cry a lot as she didn’t understand what was going on and hated the injections, but they we’re very nice about it,” she said.
Sienna had an MRI scan, X-rays and blood tests and went back for regular checks every two months.
Needing further tests, she was transferred to Addenbrooke’s Hospital in Cambridge where a specialist diagnosed cerebral palsy, microcephaly, developmental delay and a genetic disorder.
“When we were told, I couldn’t process it and burst into tears,” Tanya said.
“I thought in the first two years she would start walking and talking, but now she’s still unable to talk, walk and is in nappies.”
Sienna has the neurological development of 12 to 18 months and needs constant supervision and care.
Mum Tanya and dad Joseph Houghton are determined to get their daughter what she needs, taking on all of her care and fundraising at the same time.
Tanya, 29, said: “People think that everything is free on the NHS and you can get what you need – but we have to fight for Sienna.
“She’s only entitled to see the physiotherapist once every six months and a lot of the equipment she needs to help her isn’t available.”
The family were relieved to hear she had been accepted for the Selective Dorsal Rhizotomy procedure, pioneered by Dr T S Park of St Louis Children’s Hospital in Missouri, used to improve muscle stiffness in cerebral palsy sufferers, at a cost of £65,000, plus flights and accommodation.
Tanya said: “This is a life-changing operation for Sienna – she will not struggle as she does now.
“The fact that she is trying so hard to move about results in some falls. No matter how I try to make everything accessible for her she still hurts herself and I know she can’t go on getting bigger and hurting herself.
“There is an operation to take away the daily struggles she faces so as her mother I have to do what I can so she can have it.”
The surgery is the family’s main goal for Sienna, but she also needs communication therapy and other specialist equipment to improve her independence.
So they created the fundraising drive, ‘Sienna’s Footsteps’ to help raise the cash and, after previously raising more than £4,000 with children’s charity, Tree of Hope, Sienna’s family now have a donations page set up with Just4Children to continue on towards their £100,000 goal.
Dad Joseph is due to run 10.5k in Bexhill on Sunday with a target of adding £1,000 to the total.
He said: “I want to see my daughter do the things other children can do – ride a bike, swing on a normal swing and run around freely, and be struggle-free as much as possible.
“We’ve tried so many ways to fundraise, unfortunately so many people or places we have asked to help us have not got back to us so I’m hoping doing a race can bring in some funds.”
Sienna – who is big sister to Shayen, six, Samuel, aged four, and one-year-old Shylan – enjoys waterplay and bubbles, being with other children, clapping along to Beyoncé and going on the swings.
Tanya said: “She gets on really well with her brothers, she doesn’t like a lot of noise, so she usually puts her hands in her ears if they’re playing and getting rowdy, as all young boys do, so I have to have a lot of one to one time with her.
“She loves the swings, but because she can’t support herself, she can’t go on them now she’s too big for the baby swings – we’d love to be able to get her a specialist swing one day.
“Her brothers are all really caring towards Sienna, if we’re out walking and Shayen sees a penny on the floor he’ll pick it up and say this is for Sienna’s charity.”
“We don’t know what the future holds. As she grows up we don’t want things to be worse for her, which is why we are trying to get the help now.”
If you can donate to Sienna’s cause go to https://campaign.justgiving.com/charity/just4children/siennasfootsteps or go to https://www.justgiving.com/fundraising/Joseph-houghton to sponsor her dad’s race.
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here