Jasmine’s story: dancing with brittle bone disease

Jasmine from Nottingham was three years old when her passion for dancing took hold.

“I immediately took it very seriously; it became more than a hobby for me. I just knew it was what I wanted to do” Jasmine recalls.

Yet, by the age of eleven, her dream was in doubt. Having just suffered her eighth broken bone, Jasmine and her mum knew something wasn’t right.

Now, thanks to world-leading treatment for Osteogenesis Imperfecta and pioneering knee surgery at Sheffield Children’s, Jasmine’s dream to dance is back on track.

Jasmine explains: “We just didn’t know what was wrong, I’d been breaking bones throughout my entire life. In fact, the first was before I was even born- one of my mum’s scans during pregnancy picked up that I’d broken my left femur.

“Our GP said I was clumsy, which I am, but the breaks were happening far too often.”

Jasmine was referred to Sheffield Children’s, which hosts the largest Metabolic Bone Disease Service of its kind in Western Europe, with children coming from across the UK and around the world for specialist care.

She explains: “I was diagnosed within an hour at Sheffield Children’s. I had DEXA scans to measure my bone strength and X-rays, and they were able to diagnose me with type I Osteogenesis Imperfecta or brittle bones disease.

“I was still pretty young, I didn’t process it really, but I remember being told I couldn’t do gymnastics or dancing until my bone strength improved. It upset me because they had been a huge part of my life.”

She travelled to Sheffield Children’s every three months for infusions with doses of zoledronic acid to help strengthen her bones. The treatment is now given in tablet form every two weeks, to reduce the need for Jasmine to travel from Nottingham.

Jasmine adds: “Thanks to the infusions, my bones are now 50% stronger than they were. Looking back now, had I not been referred to Sheffield Children’s, I would be in a wheelchair right now, the diagnosis happened at a crucial time.

“It was a huge relief for my entire family, I know it had been weighing my mum down not knowing what the problem was, so it gave us some certainty. I’m incredibly thankful that I was under the care of such a great hospital with great doctors too.”

As a result of the treatment, Jasmine was able to return to her dancing. However, she kept dislocating her knees- over 40 times in total- and scans revealed she required a reconstruction to remedy the problem.

Jasmine underwent a Medial Patellofemoral Ligament Reconstruction (MPFL), in one of the first recorded procedures for children with Osteogenesis Imperfecta. The procedure involves the creation of a new ligament to stabilise the knee, prevent dislocations and protect the joint from additional damage.

The procedure was performed by Consultant Orthopaedic Surgeon Mr Nicolas Nicolaou, who is one of three surgeons to make up the regional knee service at Sheffield Children’s.

The service has grown by over 400% in the past five years, and despite COVID-19, referrals from across the country are continuing at an unprecedented rate, with around 40% currently from outside Sheffield.

Jasmine adds: “I was very nervous in the build-up to it, we knew that it was one of the first times it had been done in the UK and they explained all the worst-case scenarios to me. But Mr Nicolaou is clearly very talented at what he does, and I felt safe in his care.”

Jasmine’s surgery, in November 2020, was successful. She went on to spend three nights in recovery on a ward at Sheffield Children’s, followed by two weeks of bed rest at home. She then began weekly physiotherapy at her local hospital, with regular appointments in Sheffield to monitor her progress too.

Jasmine will undergo the same procedure on her other knee in the next few days, after an extended wait due to COVID-19. For her, the impact will be life-changing:

“It will mean that I can dance without the fear of dislocating something every time I jump, spin or move too quickly. It will be amazing to have knees I can trust and not have it constantly on mind.”

To say thank you for her care at Sheffield Children’s, Jasmine donated toys for patients in the run-up to Christmas through The Children’s Hospital Charity. They ranged from new-born baby toys, to colouring books, science experiments, board games and teddies.

She adds: “I donated toys to Sheffield Children’s when I was first diagnosed in 2012, it’s just my way of saying thank you. I spent around £150 and tried to get something for everyone.

“I’m doing a Royal U.K. pageant too to compete for the title of Miss Royal U.K. Teen, who then goes to the Royal International Miss in Orlando, Florida. I’m hoping to use my platform to raise awareness of brittle bones.

“My dream, once I’ve completed my studies is to have my own dance school and become a dance teacher. Thanks to Sheffield Children’s, there’s light at the end of the tunnel now.”

Mr Nicolas Nicolaou, Consultant Orthopaedic Surgeon at Sheffield Children’s added: “I am very grateful to Jasmine for her fundraising for Sheffield Children’s. She has worked so hard to overcome the issues with her knees and I hope sharing her story helps and inspires others.”