‘Amelia’s Scoliosis Story’ is raising awareness of condition and funds for worthy causes
The grateful family of a ‘gorgeous’ three-year-old girl, who is living with scoliosis, are to host a fundraising coffee morning in aid of two causes that have provided them with ‘brilliant’ support.
Amelia Doherty-Gill, from Buncrana, was diagnosed with scoliosis in 2021 and received her first body cast in April.
In recent months, her parents, Janice Doherty and Shaun Gill, set up the Facebook page ‘Amelia’s Scoliosis Journey’ on Facebook, to raise awareness of the condition and to also highlight the lack of and need for scoliosis checks from birth and throughout childhood.
Scoliosis is a twisting and curvature of the spine and is usually first noticed by a change in the appearance of the back.
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Janice first became concerned about Amelia when she noticed a lump on the lower left-hand side of the now three-and-a-half year old’s back.
“She has always been a wain that has loved her back being rubbed. I was sitting on the recliner one day, rubbing her back and said to my husband that she had a lump, on the left side. I said to my mother about it the following day, who told me to take her to the doctor.
“At that stage, we weren’t overly panicking as she was still a ‘bum shuffler’ and used the left side of her body when she was doing that. So, my first thought was that maybe she was overusing those muscles.”
However, Amelia’s GP decided to immediately refer her to paediatrics at Letterkenny University Hospital and an MRI confirmed a diagnosis of scoliosis.
On April 11 this year, Amelia received her first body cast in Our Lady’s Hospital for Sick Children in Crumlin, Dublin.
The cast, Janice explained, is ‘like one you’d have if you broke your arm or leg, but it is from under Amelia’s arms to her hips”.
A hole is cut in the part of the cast that covers the stomach, to allow expansion for when she eats and drinks. Amelia wears the cast at all times and it need to be replaced as she grows. The ‘brave’ little girl wore the first cast for 12 weeks, before it was removed on July 15 and her second cast then put on.
The first two weeks after Amelia received her first cast were ‘difficult’ said Janice.
“She wouldn’t walk for the first few days and the only way she could get comfortable was to lie on her left side. We took her back to the doctor as we thought it wasn’t right and had to travel to Crumlin twice to get it trimmed. Every trip is a trip to Dublin as scoliosis isn’t Letterkenny’s area of expertise. Thankfully, she doesn’t seem to be having any bother with the second one.”
Janice described how the ‘best case scenario is that the cast will correct the curve in Amelia’s spine and she won’t need spinal surgery, or that the cast will hold the curve in place for now until she is older and has more growth.
She added how, since starting the Facebook page to raise awareness, she has become aware that scoliosis is much more prevalent than many realise and said this is one of the reasons why it must be tested for and checks undertaken.
“You wonder why it’s not being tested for. My aunt mentioned to me that when she was in school they did a thing called the Adam’s Bend test, which is just asking a child to bend over at the hips, to check their spine. My father remembers getting it done, as does Shaun, but I don’t. Checks should be done at PHN appointments or when the doctors come into school, or even set every two or three years.”
The family chose Crumlin hospital to benefit from the coffee morning due to the fantastic care they have given to Amelia.
The event will also raise money for Buncrana Children’s Charity, which has also given strong support.
“We started up the page to build a bit of an awareness, but got the call sooner than we expected to go to Crumlin for the cast. I got a call from one of the committee members, who I’d know, saying they would help us out as travel, fuel costs etc all add up. At the time, we didn’t accept the offer as we were in position to go ahead ourselves but for how long that will last you don’t know.
“It’s just really good to know they are there. They are brilliant to children across Inishowen - giving goody bags to children in hospital and being a big support to families. During their Happy Week they had a Swing Set and asked people to nominate a child to gift it to. Amelia got it and it was brilliant. She can’t do slides etc but will happily sit in a swing all day.”
Janice outlined how, along with the scoliosis, Amelia was also diagnosed with ASH1L, a spontaneous genetic mutation that occurs in the womb. Amelia has delayed development and speech, which are characteristics of the mutation and it can also cause spinal abnormalities.
“It’s one of the less common ones but we’re thinking the scoliosis must be linked there somewhere.”
Janice described how her family has been left overwhelmed by the generosity of the community since they announced the coffee morning, with donations of money, food etc all flowing in.
Amelia, who loves her big brother and watching Formula One, is a great little girl who ‘just takes everything in her stride.’
The coffee morning takes place on Friday, August 12 in St Mary’s Hall in Buncrana from 10am to 3pm. All donations are very much appreciated, but if anyone is not in a position to donate, a share of the event on social media would also be wonderful. There will also be a raffle on the day and sheets with lines to buy are currently being delivered around local shops
You can also donate via Paypal at [email protected] You can follow Amelia’s page at Amelia’s Scoliosis Story on Facebook.