When Grace came into the studio to take part in the Rare Project she was an absolute delight and loved showing me her dolls and toys. Her smile and bubbly personality hides the fact that at such a young age she has already been through so many challenges. Grace’s mother, Charlotte has shared with us some of the issues that Grace has due to her rare condition.
Grace has multiple issues, starting at her head, she has a brain injury called PVL, Periventricular leukomalacia, her spine finishes above her sacrum, Sacral Agenesis (SA), around T12, her spleen is on the wrong side, she has a heart murmur and she had a cyst on her lung which was removed, her intestines were rotated but that was also fixed (at 7 days old)! As a result of her SA the nerves which control her bowels and bladder didn't ever develop and so she is incontinent. She currently in pull ups. She has low muscle tone in her legs and talipes - poss due to the SA or the PVL no one knows. When thinking about her issues, we have always been told to "wait and see". As of today her PVL has caused some developmental delay, she can't do her buttons and seems a lot younger than she is. She is also "wobbly" again not sure why, one doctor has suggested that while her vision is 20:20 she may have difficulty processing what she sees.
Her SA has definitely caused her continence, heart murmur and spleen issues and whilst they don't seem to cause any problems at the moment when she grows up I think she will need some sort of medical ID in case she is unable to tell anyone in an emergency.
So how does this affect us, well to be honest it kind of doesn't! I know that probably doesn't make sense, but it is just life with Grace for us. We get up in the night to change her pull up so her bedding doesn't smell and so she doesn't get sore. She has a shower every morning to make sure she stays fresh. She has her pull ups changed throughout the day at school. When she comes home she is like any other normal child. She plays, watches tv or reads. Then she goes to bed. Grace's sister started Tae Kwon Do and Grace wanted to go too so she recently had her first lesson which she really enjoyed.
I am still changing nappies even though she is 7. Even doing night changes. Luckily she sleeps through it. Sometimes she gets wet through at school, or catches her clothes on a dirty pull up so she needs to change clothes in school. She has started to worry about people noticing. She doesn't keep up with her friends and again, she has started to notice.
The other morning I told her to drink her milk to help her bones grown she asked me if her spine will grow......
Grace is a wonderful child whom we love very much. We encourage her to try everything and allow her to make her own decisions (within reason!).
One sports day there was a relay race which involved scooters. Each child went a few times but Grace fell off on her turn. All the teams had stopped at the end of the race, she got back on the scooter and 'finished' the race. Tears were streaming down my face. This was my baby who struggled so hard but didn't give up. Even though she was last, she kept going. The whole school was cheering her on! It wasn't fair, why should my baby have to suffer this.....? After I spoke to the headmistress and found out that the race had finished, Grace just insisted on having another go!!! To me this summarises Grace to a tee, she wanted to do something and nothing will stop her trying!
The rare project is such an important thing helping people to understand, not to be scared and make them realise that Grace is the same as her peers in so many ways. She has the same hopes and fears as her friends!
Find out about some of the other children taking part in the Rare Project by clicking here.
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