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Family in desperate plea to raise £16k to fund daughter’s life-changing surgery

A family are desperately fundraising £16,000 for their daughter’s life-changing surgery.

Suzanne Kingston’s world was turned upside down when her oldest daughter Alis was diagnosed with scoliosis, reports HertsLive.

Alis found out she had the condition five years ago when she was 14 after developed while she was going through puberty.

By the time the family had noticed the condition and gone from one hospital to another, the curvature had become so severe that the only option was surgery.

Now Suzanne, a primary school teacher who lives with her family in Sawbridgeworth, Hertfordshire, has revealed that her second daughter, Holi, has been diagnosed with the same life-changing condition.

Scoliosis is a sideways curvature of the spine which most often occurs during a growth spurt before puberty, and while the cause of most cases is unknown, it can sometimes be brought on in people suffering with cerebral palsy and muscular dystrophy.

After managing to raise around £35,000 for Alis’ surgery in Germany, the family now need a further £16,000 so that Holi can receive her treatment, with a GoFundMe page in place.

To help the family raise money, visit their GoFundMe page here

Suzanne has revealed that her second daughter, Holi, has been diagnosed with the same life-changing condition
Suzanne has revealed that her second daughter, Holi, has been diagnosed with the same life-changing condition

Suzanne said: “It was a difficult and lonely time as we investigated the surgeries available and the only surgery offered in the UK at the time was fusion.”

Fusion involves the patient’s spinal discs being removed from between the separate vertebrae in the spine before the spine is then forced back into a straight line with metal rods screwed into place on each side to hold it in position.

After a time the vertebrae fuse together and become one long bone which fixes the scoliosis but leaves no movement in that part of the spine.

Suzanne knew there was more that could be done for Alis, so she researched a new procedure called ASC – or tethering – but this treatment was not available in England at the time.

This type of surgery involves a cord being attached to the length of the spine and tightened, which causes the spine to become straighter. The correction is often not as perfect as fusion but there is no loss of movement.

An X-Ray of Holi's spine shows how bad the curve is
An X-Ray of Holi’s spine shows how bad the curve is

Suzanne took her daughter to Germany to receive the treatment and she spoke about the life-changing day of having the surgery approved.

“We had to go for it,” she said. “We went to see Dr Trobisch in Germany and he approved Alis for surgery. It was a great day but then reality hit, we had to raise €35,000.”

With help from the local community, the money was raised and Alis was able to receive her surgery on August 18, 2018, and has since completed her A-Levels and now studies at Birmingham University.

Suzanne said she had more support both financially and emotionally than she ever could have dreamed of.

Everything was going well for the Kingston family until a couple of weeks ago when they heard that their younger daughter, Holi, needs to have surgery as well – for the same reason.

Holi is three years younger than Alis and as soon as her older sister received her diagnosis, Holi was checked and it turned out she already had a small curve in her spine.

Both of Suzanne's daughters have scoliosis which causes a curvature in the spine
Both of Suzanne’s daughters have scoliosis which causes a curvature in the spine

Holi had to wear a back brace for 23 hours a day which she did religiously for four years, but in 2020 doctors told her the brace had worked and because she had stopped growing she no longer needed to wear it.

Suzanne said: “We were all over the moon.”

However, in recent months Holi started to complain of back pain and was finding it harder to walk for long periods without resting and her mum had noticed her hip seemed to be sticking out on one side.

An x-ray was performed on earlier this month where it was discovered that Holi’s curve had nearly doubled since she had stopped wearing the brace.

She is now the same age that Alis was when she had her surgery – and her curve is worse.

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The family spoke to Holi’s consultant in the UK – where the tethering procedure is now being trialled – but the parameters for acceptance are very narrow.

Due to Holi being 16, she is considered too old for the trial but her consultant said that tethering is the best option as fusion would greatly affect mobility due to the amount that Holi’s spine is curving.

The family went back to Dr Trobisch in Germany and Holi has now been booked in for surgery on July 28.

Suzanne has begun fundraising again and she is trying to raise £16,000 on top of the money that is already in place.

The GoFundMe campaign began earlier this month and a quarter of the money has already been raised, so now an additional £12,000 is needed.

Suzanne said: “We want Holi to have the same positive experience as her big sister and to go through her A-Level years pain-free.”



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