Willow Grace’s Therapies

Hi, my name is Laura mum to a gorgeous girl called Willow & new baby boy Ezra.

As a lot of people will know my little girl Willow has an extremely rare genetic condition called Congenital disorder of glycosylation (CDG) when willow was diagnosed she was only 1 of 60 worldwide. It’s an extremely scary place to be in as there’s only a handful of doctors worldwide who understand her condition. She started at only 7 weeks old with a seizure type called Infantile spasms which again is extremely rare but a very serious kind of epilepsy. If untreated it can lead to a very uncertain future. Willow has luckily been seizure free now for over a year due to medication controlling them. I count my lucky stars each and every day that we have been lucky enough to have some control. We’ve always been told that it’s extremely likely some sort of seizures will come back one day but I just keep praying that won’t be the case for our gorgeous warrior. She has made some huge gains within her development and hit milestones we got told she would never hit. Including being able to hold her own head, crawl, eat food orally and have a safe swallow, cruises furniture, sits independently and plays. We’re still struggling with speech but she is making more and more noises each day so I’m hopeful. Unfortunately at 21 months old willow still isn’t able to walk and the time has come where as a family we need as much help as we can to support willow and give her all the opportunities we can to get her to achieve her goals. It’s taken me a long time to ask for this help but I want to offer as much as I can for my little girl to help her achieve the best to her abilities. Im hoping to be able to start private physio and speech therapies to help willow progress and give us as a family some activities we can do which could help at home too, but obviously these therapies come at a huge cost! If you could help us to do this by donating anything you can in such difficult times it would be appreciated more than you will ever know! This little girl is a true fighter and deserves the world and more and I just wish I could give it to her and know everything is going to be okay! I pray one day with the help of these therapies we get to prove to doctors they were wrong and show them how strong willow is! 

Thank you for reading and again a huge thank you if you can donate anything at all.

Laura & Family x