I was told to plan my twin babies’ funerals before they were even born
THE mum of two twins was told to plan their funerals before they were even born.
Little Hope and Amelia were diagnosed with brittle bone disease when they were in the womb.
They had already broken their femur and tibia bones in their legs – leading doctors to warn they wouldn’t survive birth.
But despite being born with broken ribs and Hope breaking both arms before she was six weeks old, the pair are about to go to nursery school.
Mum Claire Mawforth is overjoyed with the milestone, after starting to prepare for their funeral as they grew inside her.
The youngsters, now three, can walk for short periods of time and are always smiling, their mum says.
The 36-year-old : “Hope and Amelia are doing well considering their disability. They can’t do the same things as other children of the same age as they get tired easily and their bones become sore and tired.
“In their brains they still want to carry on but their body doesn’t let them. They have had numerous broken bones over the past years from simple things like jerking their arm or missing a object.
“They have both been for taster sessions at nursery and seem excited but nervous to start.
“They haven’t really been around many children their age due to Covid restrictions, but I’m hoping the nursery setting will allow them to gain friendships with their peers.”
What is Osteogenesis Imperfecta?
Osteogenesis Imperfecta, also known as Brittle Bone disease, is a genetic condition characterised by bones that break easily, often from little or no apparent cause.
It is caused by a genetic mutation that affects the body’s production of collagen, which can be found throughout the body, especially in a person’s bones and other tissues.
The condition can vary quite drastically from person to person so a classification system has been identified to describe the different types of OI.
Symptoms include frequent fractured bones, muscle weakness, hearing loss, fatigue, joint laxity, curved bones, scoliosis, blue sclerae.
People with the condition can also have brittle teeth and short stature among other medical problems.
To diagnose OI, doctors will typically do x-rays to check for fractures and bone changes.
In some cases genetic testing is possible, but not undertaken routinely.
The twins have had rodding surgery on their femurs and tibias, which is a process designed to make the bones stronger.
It doesn’t stop their bones from breaking, but will help to keep any breaks from becoming severe.
Claire wants to raise awareness and share her experience with other families in the same situation.
She has planned a challenge to raise money for The Brittle Bone Society and is climbing Scafell Pike with a group of pals, family and colleagues.
She said: “For me this is a massive challenge as since having the twins I’ve not don’t any form of training or fitness but I know I’ll make it to the top with pride for my girls and all those living with this rare condition.
“Raising funds for a charity that has offered so much support since birth of the twins is close to my heart and I’ll be proud to say I’ve accomplished this challenge.”
