My son Freddie was diagnosed at the age of 6 months with Osteogenesis Imperfecta also known as Brittle Bone Disease. In addition to this condition he also suffers from Scoliosis and recently we have been informed that he has a mental delay.

Freddie has suffered 6 breaks in total since being diagnosed with Brittle Bone Disease and has at times, had to be hospitalised for up to 2 weeks to be in traction.

Freddie, who is now 18 months old has had a recent MRI scan to monitor the severity of his Scoliosis. Unfortunately the scans provided results that were not expected and we were informed by the Consultant that Freddie's Scoliosis had caused the curvature of his spine to increase from 42% at the age of 6 months to 75%.

As a result of the rapid deterioration of Freddie's spine we were informed that this could now become life threatening to him, since his spine would start to internally crush his organs. The Consultant Freddie was under, at the time, explained that he was unable to prevent or help him due to the complications surrounding his Brittle Bones Disease and the Scoliosis combined.

As you can understand this was completely devastating and unexpected news. Four hospitals in England were originally contacted, however again confirmed as the prior Consultant had done so, that they were unsure how to help.

Due to the life limiting time restraints placed on us as a family with regards to Freddie and how quickly his spine could start to affect him internally, we decided to go private and seek specialist help from Great Ormond Street. The NHS waiting times were too long and we needed urgent help.

Freddie was referred to Great Ormond Street, and on the 20th March 2018 we went up to the hospital to see one of the spinal specialists.

GOOD NEWS! The Specialist has informed us that although the condition of Freddie's spine can become life threatening, he believes that we can place him in a plastic brace, which could prevent the curvature of his spine becoming worse. Freddie who is currently too young for surgery will remain under the supervision of Great Ormond Street, with three monthly visits, to monitor the affects of the plastic cast and to ensure that the new equipment is preventing further curving of his spine. This is a temporary measure until he is around 4 years old, when MAGEC rods will be inserted into his spine to provide structure and straighten the curve.

Going private as you will all be aware costs a considerable amount of money, in addition to this travel to London and Birmingham hospitals, loss of earnings and house adaptations will cause a strain on our family finances. In the circumstances only one parent can work and the other is a full time carer to Freddie.

We therefore ask that you help us raise money to enable us to give Freddie the best future that he can possibly have.