GRACE

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 also finishes above her sacrum around T12 (known as Sacral Agenesis - SA), and 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 when she was only seven 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’s currently in pull ups.  She has low muscle tone in her legs and talipes - possibly due to the SA or the PVL - no one knows”. 

“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, though we’re 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 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 her clothes. She has started to worry about people noticing. She doesn't keep up with her friends and again, she has started to notice”.

“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! Afterwards, I spoke to the headmistress and found out that when the race had finished Grace insisted on having another go! To me, this summarises Grace to a tee - she wanted to do something and nothing will stop her trying!

If people were just more aware of these conditions I think it would make them more accepting and comfortable around people with disabilities. One day this could be their child or grandchild and wouldn’t they want them to have a happy and healthy life?”