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


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The Lonsdale Family

Mary and DanielDaniel was born on the 20th January 2005 at 4.10am, weighing in at 8lb 14oz.

Daniel was born with a Heart Condition called Tetralogy of Fallots and a syndrome called Di-George, which we knew nothing about this until I had my 20week scan at the hospital when they found out that something was wrong with his heart, that day was the worst day of my life, finding out that your child was going to be born with a heart Condition, from that day we had to travel to the John Radcliffe Hospital in Oxford to have the scan's, we had a good medical team.

During my pregnancy both me and my husband were tested for Di-George and the results came back as me having the Syndrome which I was surprised at, but when we found out a lot of questions were answered as to why I spent most of my childhood in GOSH, I can remember being in hospital most of the time, I had a lot of problems with my ears which I ended up having grommets put in every six months, until I was 16. I went through school ok, I also went through college I have always had a job. Maths was a struggle for me at school.

When Daniel was born we were seeing so many doctors it was hard to keep up with things. We were under Dr Archer and on one of our medical appointments Dr Archer gave us a date for Daniel's Operation which was to be 23th January 2006, we were told that we would be in for about 14 days, but infact we were only in for 6 days, after this we were aloud home where Daniel got better, I even travelled down to the Falklands with the kids to see my husband because he was away for Four months.

Daniel seemed to get better and with regular check-ups everything seemed ok, but I noticed when Daniel started to walk he wanted picking up after so many steps, so I went back to the doctor's who sent me back to the hospital to see Dr Archer and when we got there we went in and they scan Daniel only to find out that the operation wasn't as successfully as we had hope, they turned round to us and ask when we could come in because Daniel needed another operation which was a big shock to us. Took Daniel to the hospital and he had the operation which this time was successful, and he was only in for 3 days.

We found out about the Max Appeal through the Hospital, I was giving a leaflet, so I gave them a ring and we have been with them every since, we joined when Daniel was only 6 months old because we went horse riding because our daughter who is now 14 and has Di-George, started riding at the Camp Stables where we used to meet up twice a year, both me and my husband help out on the activities and have also helped out on one of the conference's which was at the Coventry Football stadium where we took the kids to Warwick Castle, to the Shakespeare company. We have also helped out on the water activities weekend that used to be at South Cerney once a year where all families meet up and the kids have fun on the water with qualified staff.