Ivy'v Story What care and support is available for those with deletion 22q11 syndrome?


Adam

Make a Donation

Find Max Appeal on Facebook

Join Max Appeal

Ethan's Story

Ethan's Story

Ethans StoryMy son Ethan is 10yrs old and was diagnosed with 22q11 deletion or Di George Syndrome. He had a really hard time as he was not diagnosed until he was almost 7. He was in mainstream nursery and then school and was struggling, he was so unhappy. I was fobbed off by doctors but in my head, I knew something was not right. Ethan was tiny when born. he could not speak (this was when he was 3-4yrs) he was crying all the time, he couldn't go the toilet, was ill all the time, his eyesight was very bad, he was weak and small and so very vulnerable. I was really worried and nobody would listen.

Ethan's Story

Ethans StoryHis nursery teacher told me he could not count, did not know his ABC's and colours, but I knew he did, he just couldn't speak to express himself. This continued into infant school, and he was being lost in the crowd. A breakthrough came when his teacher asked me for a meeting and we discussed getting an assessment through the school, this was a turning point in Ethans life.

The assessment was carried out whilst they watched us together in the waiting room. A week later I received a letter (also the school and my GP) which basically said Ethan was acting the way he was and stunted in his development because I had no bond with him!! I was devastated and outraged. I demanded another assessment to be done face to face this time and the previous one removed. At the assessment within five minutes of meeting the doctor he told me my son had a syndrome, which could only be confirmed by a blood test. It took a further three years of tests to get to the result but just before his 7th birthday he was diagnosed and we were finally moving forward. Within those three years the same doctor recommended a school which would be suitable for Ethan. Ethan started at the school and within a month of his first appointment his speech therapy started.

Ethan's Story

Ethans StoryI suddenly had a happy, smiling child that wanted to go to school. He was a very different child and I will never be able to thank all the teachers at the school enough for putting the joy back on my boys face, and the best part of all...he said mummy!...the pictures I have added are at an awards ceremony in Bootle, Liverpool.

His teacher put him forward for an award for children who have problems but they fight for their dreams, called The Dreamcoat Award. 500 children were nominated that year and Ethan won. He was so proud of himself and of course so was I. My son is now a member of the student council, he goes swimming, horse riding and camping and has friends! The reports from his educational beginnings were horrid and bleak. Now his reports glow with the promise of a happy future. Best of all my son dreams of that happy future with a smile on his little face.

That's our story so far....I will keep you posted on what comes next.

Michelle Croxton