During 2014, he began to change, tiring easily and finding some physical activities hard going. After various consultations and appointments he was referred on to Great Ormond Street Hospital for further tests just before Christmas 2014.
He had an ECG and an Echo carried out on his heart and various other muscular tests. The results were inconclusive and so further tests were scheduled for the New Year.
As a family we had a lovely few weeks over the Christmas period and he actually seemed to be improving.
We had a party on New Year’s Eve and we were all looking forward to the year ahead.
On the 8th January 2015 we woke up as a family of four. We went to work and school as usual, not knowing that this was going to be the day that changed our lives forever.
We had dinner, we put Max to bed and wished him goodnight, sweet dreams, love you and see you in the morning as we always did.
When we went upstairs to go to bed two hours later we found our beautiful boy had left us.
We subsequently found out that he had an undetected heart condition known as hypertrophic cardiomyopathy (HCM) – a thickening of the muscle wall of the heart. This is a genetic heart condition that does not always display symptoms and consequently is very difficult to detect.
The tests that had been carried out did not pick this up as the abnormal heart rhythms associated with HCM can only really be detected after puberty.
Our lives have been shattered and irrevocably changed forever because of this condition and the fact that it was unable to be detected.
We, as a family, and with the backing and support of family and friends, decided to set up Max’s Foundation as a lasting legacy to Max.
Our hearts are set on change.
Our funding will help:
Change how children are screened and treated for genetic heart conditions.
Change how children, young people and their families are supported when they are affected by genetic heart conditions.
Hearts set on change.
Max's Foundation has supported and funded a number of projects since its beginning and created a number of long standing partnerships. If you would like to learn more or apply for a grant please follow the link below.