A MARATHON-RUNNING uncle has set up a JustGiving fundraiser for his niece who was diagnosed with a devastating spinal condition at just six-months-old.
Sienna Gibson was diagnosed with Type One Spinal Muscular Atrophy (SMA) last year after parents Sian, 25, and Jack, 26, noticed her struggling with head and arm movement.
Sienna from Redcar, North Yorkshire, spent two weeks in hospital where she received life-saving treatment Zolgensma, which reduced nerve cell deterioration and increased her life expectancy.
With the family’s lives having now changed forever, Sienna’s uncle TJ GIbson has set out to raise money and awareness for the condition through running a series of marathons in dedication to his neice.
In February 2022 at three-months-old, Sienna seemed to struggle with controlling her head movement and her arms appeared to be bent in towards her, with tightly clenched fists.
The tot had also developed a tongue tie, which the worried parents took her to a health clinic for to be cut.
Following up with a visit with the chiropractor, the parents were soon informed that their daughter had low muscle tone and was referred to a GP.
However, after the GP consultation, the parents were hit with the devastating news that their daughter likely had Type One SMA and would need to see a neurologist.
Despite the hurdles, the family were eventually seen by a neurologist in early May where Sienna was officially given the diagnosis,
Zolgensma gave Sienna a longer life expectancy, but she now relies on a bipap for breathing. Mum Sian Kennedy has also now reduced her working hours to two days a week and relies on family helping out.
TJ, 29, set up a JustGiving fundraiser on behalf of Sienna in December writing: “My name is TJ Gibson, I am taking part in the London Marathon to raise money for the charity SMA UK.
“SMA UK supports families when someone has a diagnosis of Spinal Muscular Atrophy ( SMA).
“SMA is a group of hereditary diseases that progressively destroys motor neurons—nerve cells in the brainstem and spinal cord that control essential skeletal muscle activity such as speaking, walking, breathing, and swallowing, leading to muscle weakness and atrophy.
“There are four types ranging from one-four, one being the most severe.
“I have previously taken part in the Manchester Half Marathon in June 2022 and raised £671 to raise money for the recent diagnosis of my niece Sienna, the Redcar Half Marathon in October 2022 and raise £500 for SMA UK and now look forward to participating in the London Marathon in April 2023, again all funds raised will be given to SMA UK.
“The reason for choosing this charity is I have a niece, Sienna, who is one-year-old, she has been diagnosed with SMA Type One, currently recovering from life saving treatment Zolgensma – a £1.79m trial drug.
“As well, I have a sister Julia, 30, who has been diagnosed with Type Three from a very young age who is currently receiving an oral medicine recently approved called Risdiplam.
“These treatments will hopefully halt the deterioration of the nerve cells and give them both a better chance at life and longer life expectancy.
“SMA is a cruel, rare disease that destroys lives every year and affects numerous families.
“Due to my family being part of this, I would love to be able to give back to SMA UK for everything they have done for me and my family – this is a charity close to my heart.
“SMA UK have a certain percentage of funding towards the life saving treatments available that have changed my niece and sister’s lives.
“They support them emotionally, financially and have surrounded them with amazing specialists and a loving community for support
“Thank you for your time on reading my family story. Any donations all add up and hopefully we achieve our target.”
Speaking to mum Sian today, she said: “Sienna was born 13th November 2021 and she was later diagnosed on the 12th May 2022.
“She didn’t have any head control- looking back at one-two months, she moved her head more.
“She wouldn’t enjoy tummy time, she would just flop.
“We noticed her arms were sitting inwards, very tight and fists clenched – she just looked ‘floppy’ and had less movements within her legs, she didn’t kick out or attempt to roll around or grab toys.
“We always had suspicions but it wasn’t until we visited a clinic for a ‘tongue tie’ and the chiropractor actually told us she had low muscle tone which kind of gave us the answer we were ‘debating’ – we just thought she was slow developing.
“It took months from the chiropractor telling us, to getting a neurologist to see her at an appointment.
“So, we visited the chiropractor in February when she was three months old, visited the doctor and mentioned our concerns – and mentioned it to my health visitor who was fab.
“She pushed for a GP appointment, then he referred us to a neurologist. They managed to push it to the end of May.
“I also mentioned my concerns constantly about SMA as it runs in my partner’s side of the family (his sister has type three) and they told me we had to wait until May and there was nothing they could do for us – it was horrendous as they could have done some genetic blood tests.
“She was diagnosed by the 12th May and we spent two weeks in hospital with her.
“It’s affected us a lot, in a number of ways, our life has changed massively in good and bad ways. We now have to care for Sienna 24/7.
“I have had to drop my hours at work – I used to work five days, I work two now and her auntie has her for those two days.
“Sienna has an overnight bipap machine that gives her a rest from breathing as hard/fast.
“She also uses a cough assist as she has a weak cough and cannot do this herself.
“She has a suction machine for her secretions as when we use her cough assist [chest Physio] we have to suction after, we also have to pat her chest.
“She also is nasogastric fed via a feeding tube and that’s four times a day. We spent a lot of time being trained on the machines meaning we lost pay at work.
“We spend a lot of time in hospital just for a simple cold.
“I think we do live in a lot of fear, due to her life expectancy but we also love her so much and the SMA won’t change that, she’s so special and she’s such a character and the caring side is hard but I also think it’s really made us look at life differently and appreciate things so much more.
“Things are easier now as time has moved on, we have a routine we work as a team, we can’t live how we used to by popping here or going out and about as we please but we also love all the time we spend with sienna making her progress and become stronger so it’s got it’s blessings.”
Speaking today, TJ said: “Since I was a kid I’ve always loved running. I watched Mo Farah running the London Marathon and I always wanted to meet him but didn’t think that would happen.
“I always wanted to do it but couldn’t get in the London Marathon as it’s always full and when my niece got diagnosed with SMA that was my reason to do it.
“I got myself a place in the London Marathon, hopefully to create awareness for people suffering with SMA and hopefully raise money to give something back to them and help other people suffering with this condition.
“So I joined a running club and attended sessions with the club and entered races to get more training in before the big day.
“I have stopped drinking alcohol since 18 December to focus just on this event – wish I could do the same with healthy eating but I love my food too much.
“I have done 3 events for Sienna: June 2022 in Manchesters’ Half Marathon, October 2022 in Redcar’s Half Marathon and then London Marathon in April 2023 but then [I’m] going [to] be signing up to more races for her.”
At the time of writing, TJ’s fundraiser has reached £1,055. To donate, you can visit: https://tinyurl.com/y54zbh5e
