Macey-mai stem cell treatment

Stem cell Therapy treatment.

 “ Its Not how much we give but how much Love we put into Giving “ Macey-Mai’s Go fund me dreams !!

Let's help Macey-Mai Richards receive stem cell treatment.

Our beautiful daughter was born in March 2015 completing our family. Before she had reached her 2nd birthday we noticed a few things in her development.

A number of birth marks were visible on the trunk of her body and after she reached 18months old we noticed her development had regressed.

 After seeking advice from a number of health professionals regarding the birth marks we were told that there was nothing to worry about. A short time later after a self referral to a speech and language assessment we were sent to a paediatrician who asked the sort of normal questions that you would expect. Everything seemed relaxed up until the point of examination when panic seem to have set in with the paediatrician over the amount of birth marks Macey-mai had on her body, she then went on to look in the armpit and noticed freckling. We had earlier discussed an issue about my daughter also having a Squint and I was subsequently given the diagnosis there and then that my daughter had NF1 (neurofibromatosis type 1).

I had no idea what this was but knew it was quite serious and at the time thought it was life threating or at the very least life changing. Panic set in and during the rest of that appointment I could hardly hear what the paediatrician was saying to me. I felt numb with fear from head to toe and shaking like a leaf. I was on my own as this was meant to be a discussion regarding my daughters development, I was in no way prepared for what I had just been told.

It turned out that NF1 is a genetic condition that causes tumours to grow along your nerves  but can cause a range of different symptoms including birthmarks,   tumours under the skin, clusters of freckles, problems with bones, eyes and the nervous system.  

 I went home to share the news amongst family. I don't think anyone could make out what I was saying past my tears and my differing voice. We were then told that Macey would have to undergo an MRI scan for Macey-Mai's brain.

A week later the appointment came through to the oncologists who confirmed our worst nightmare that Macey-Mai had tumours along the optic nerve. The pain of hearing that our daughter had tumours that could potentially effect her vision was indescribable and hits hard even as I write this now.

For the past 4/5 years we have spent a lot of time at hospital with follow up appointments 6 monthly MRI scans and 3 monthly check ups with the ophthalmologist. My daughter was also shortly after her NF1 diagnosis also assessed and given a diagnosis of ASD (Autism Spectrum Disorder).

I did a lot of research and finally found a fantastic specialised school for her to join at the age of 5. Our daughter has made good progress and continues to make progress but unfortunately a lot of her traits from the autism effects her ability to fulfil all her potential and develop independent living skills. We have been very blessed so far that Macey-Mai has not needed chemotherapy but what we would like to do is ask for your help to receive donations to have stem cell treatment. America have a big study for NF1 patients which will be released in 2025 for the stem cell treatment. Stem cell treatment has also been known to help children with autism significantly improve adaptive and cognitive functioning. This is something we have also witnessed first hand when we recently met up with a family who’s little boy had this treatment.

 It's not something that is open to us as we could never afford this alone and it is never easy to ask others for help but we are so desperate to see a our little girl blossom into all that she can be that we have started this fund hoping to touch your hearts.

We thank each and everyone of you for reading our story.