Hi my name is Lacey and I am the eldest of four. Two of my siblings are RARE.
Ronnie was born in 2016, whilst my mum was pregnant with him they found out that he had Bilateral Talipes, this is a deformity of the feet, when he was born his feet were fixed into place, he required extensive treatment to help correct these. He had plaster casts which were changed weekly and at the age of 8 weeks roughly he had a Tenotomy done this is where they cut the tendons in the back of his leg to release the foot.
Over time it was noticed that Ronnie wasn’t meeting his milestone, he had struggles with feeding which we then found was due to his low muscle tone. Ronnie had a PEG fitted in 2017.
Fast forward to 2019 my mum was pregnant with my little sister Mila-Belle, in my mums pregnancy they found at 14 weeks gestation that Mila-Belle had a minor Exomphalos (her bowels were on the outside due to her tummy wall not closing correctly) they told my mum that due to Mila’s size she could have a condition called Beckwith-Wiedemann Syndrome, they could do a test whilst my mum was pregnant called an Amniocentesis but my parents refused this due to the risks that come with it.
When Mila-Belle was born it had to be at The Royal London hospital, this was due to them having the specialist there. She had surgery at one day old which was successful. They took bloods which they said would be sent off and we would have to wait for the results.
8 weeks later the results were back and it was confirmed, Mila-Belle has Beckwith-Wiedemann Syndrome SHE IS 1 IN 15000 so she is RARE.
Being a sibling of a child with rare conditions can be hard but they are the best and I wouldn’t change them for the world. I have made so many amazing friends through their journeys and have spent my time advocating for others.
To get involved with the RARE Youth Revolution, and this series, you can email our youth coordinator James Brooks at firstname.lastname@example.org.
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