Help Willow Overcome These Awful Seizures and give her a fighting chance at the life she deserves.
Dear Friends, Family, and Kind Strangers,
My name is Laura and I'm mum to Willow. I’m reaching out to you during a challenging time in our families life. Unfortunately Willow is experiencing a very scary unpredictable diagnosis of CDG (Congenital Disorder of Glycosylation). What comes along with that diagnosis is seizures and many other awful symptoms. We had been an inpatient in our local hospital for the past month which we have now been discharged and are no further forward in this journey we face.
When willow was a baby she was diagnosed with an extremely rare genetic condition called CDG. Willow is 1 of 60 cases worldwide documented. We were told willow would never be able to walk, talk or possibly see past the age of 2. Willow was having an extremely rare seizure called in infantile spasms and prognosis and treatment is essential to give your baby the best shot in life. We grieved for our little girl as she just laid in hospital for months on end. We then managed to gain seizure control for around 3 years which is unheard off with the cocktail of the correct medication. Until now. Seizures have returned and we're getting no answers. I cannot watch my baby girl who is now at the age of 4 walking and starting to say some words regress and loose herself to this awful epilepsy. We need answers and help and unfortunately our local hospital just isn't giving us that. We need to take it upon ourselves as a family and community to go private and get willow the help and treatment she deserves. It's been absolutely heartbreaking watching her have multiple seizures daily when we have had a few years or relief and joy.
Due to this unforeseen situation, I am in need of help raising money to get us the private treatment willow needs. We have found a neurologist in Leeds who has a lot of interest and experience in this field but of course going private comes at a cost. Every little bit counts, and your generosity will go a long way in helping me fight for willow and give her the best shot at giving her seizure freedom and letting her be the gorgeous little girl she is.
The funds raised will be used for:
Getting medical advice from a private neurologist.
A possible MRI to see if willows brain has had any changes since birth and to see if there's the possibility of brain surgery.
And for any further testing we get asked to do.
If you’re unable to contribute, your thoughts and prayers mean the world to us. Even sharing Willows story with others can help more than you know.
Thank you from the bottom of my heart for taking the time to read my story and for your support.
With gratitude, Laura