Abit about our gorgeous Grace…

Grace has spinal muscular atrophy type one. She was diagnosed at 9 months old and at this time we were told to go and make memories as she wouldn't live past the age of two. And… here she is now at four & 1/2 years old. SMA is the number one genetic killer in children. Grace has had two treatments so far one being Spinraza and the other being Zolgensma (Gene Therapy) we are very grateful for these and although we don't definitely know we think these have got her to where she is today.

Grace loves to be the typical four year old but there is ALOT of things she cannot do that others can. We are raising money for our all time dream for her to have a hydro pool at home because this is the one thing she CAN do freely and loves. Unfortunately Grace cannot walk but she can sit, she has a stander which she uses each day for an hour to be able to weight bare which is good for her bone density. Grace also has a power chair which she loves and it gives her great independence. Each day we do an hour chest and general physio morning and night and this is to maintain what she has and so she doesnt lose it. Our physios tell us we dont need to do as much as we do but we feel very strongly on giving the Grace the best life we possibly can. Grace is on a ventilator at night which gives her the well needed rest from working so hard every day just to breathe.

We are now starting our home renovations to make it adaptable for grace to live the freedom she so deserves. she also needs a new car seat and buggy which are coming in at over £7,000! And that's without everything else she needs and the hydro pool. Hydro pools start around £20,000 and so far we have around £5,000 raised from previous events and donations. With this we will also need a outhouse for the hydro pool to go in, hoists, changing benches & equipment to go in the pool. It is very risky for grace to be taken out and in of different temperatures due to her weak respiratory system. If Grace was to catch a common cold it could be life threatening and she would normally end up in hospital for a minimum of 2-3 weeks

To raise this money so many people have been involved and have been kind enough to do lots of different events where money can be raised. We thank each and every one of you involved and donating ❤️

Our little girl deserves the world and we are ready to do the best we can for her with all your help too please.

If you wish to see Graces journey please follow us on instagram: gorgeousgracewithsma

Thankyou from the bottom of our hearts x