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The Perry’s Story

The Perry’s Story

At our 20-week scan, we were told our baby wasn’t measuring properly and I had to get growth scans every 2 weeks for the rest of my pregnancy. Each appointment was scarier than the one before as we were unsure what they were going to find or what they were looking for. At 28 weeks we were told that best case scenario would be dwarfism. We were told our baby may not survive past 36 weeks and offered a termination. We kept positive and carried on.

Then our beautiful girl arrived, she was perfect and all in proportion. We left the hospital and no concerns were raised.

When she was 5 weeks old at a follow-up X-ray we were in disbelief when they discovered our tiny girl had multiple fractures. She has a rare bone condition called Osteogenesis Imperfecta (brittle bone disease). She had been so content and happy, it was hard to take in. We continued to watch her grow and become such a little character and have tried to keep everything as normal as possible.

But sadly, her femur fractured and our girl was admitted to hospital for 2 weeks. Our baby girl was so brave, strong and coped so well even though she was in lots of pain and was in traction –  we couldn’t pick her up for a cuddle. She was still smiling and giggling away. We feel incredibly blessed to be the parents of such an amazing little girl, she makes us more proud every day and we love her so much!

Treatment started to strengthen her bones to help avoid her having many more fractures in the future. She is going to have a very normal life but will just be a little more fragile.

The Brittle Bone Society have offered indispensable support to my family and I. I have experienced first hand the support they can offer and without them, the world would be a much scarier place for us.

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