Harry

England, February 2008

Harry was born on the 11th February 2008 and diagnosed with Cri du Chat syndrome 6 weeks later. So far he has had two hernia operations and has problems with his kidneys but despite that he is one of the happiest babies you could ever meet. He lives with his mam and dad and two sisters who all adore him, near Hull in England.

We would all like to hear from anyone anywhere in the world as we have lots of questions to ask and lots of stories to tell. Please contact us via the link below.

Rich and Liz

18th March 2009

We have been contacted by a family in New Zealand which has been a huge help to us, just talking to another family with experiences with CDCS. I would recommend anyone to get in touch with another family to swap stories or ask questions. This photo is the first time Harry sat up unaided although only for a short while. He is getting better and for longer on a daily basis.

6th October 2009

Harry is doing well and is now 18 month old, he sat for over 5 minutes unaided a few weeks back (as photo), and is getting better weekly he has also achieved some more communication skills he will touch his hair, ears and nose on command and also show his tongue on asking. He also will give plenty of kisses and smiles on seeing someone he knows. Harry has also achieved feeding himself finger food although only food that will melt in his mouth. He has a liking for digestive biscuits.

Harry can get around the floor by rolling but has not yet come to grips with crawling although he has found how to get his boots off and will always get one leg out of his sleeping suit. He has received a chair and a walking frame to help his motor skills and although it is early days he loves the chair as he can sit at the table with the rest of the family and watch the TV. The walker he only received today and uses it more for standing because once he puts weight on his legs they don’t move but if he is laid down then he can’t keep his legs still. One day he will work out the stand moves and there will be no stopping him.

Harry’s reflux is well contained with medication and he has recently had a Mag3 test on his kidneys to see what action may be required as there is a problem with one of them with the additional problem of them being joined together in a horseshoe shape. His feeding is still up and down but at the moment is doing really well and his weight is gaining.

He now attends nursery 3 times a week and seems to enjoy his time there. One day is at a special nursery and the other is at a private nursery where he mixes with other children without disabilities and the mix seems to work well.

We have a multi-agency meeting next month with all involved with Harry and hope to plan his future educational and home needs. We all believe Harry will hit his milestones but much later than most, still, no matter what, he will bring huge happiness and love to all that he meets.

23rd December 2009

Harry is as happy as ever and bringing us more joy then ever before, although he won’t know it’s Christmas he does notice that something is different because there is a tree in the house and the outside of the house is all lit up. Where we are going to put all his presents I don’t know.

Harry is going into hospital in January to have an operation on his kidneys hopefully they will be able to save both but one is not developing as normal and because it is joined with the other one we hope there will be no complications.

Harry is now on his third pair of boots so must be growing faster than we think but he still has his good and bad days eating and the little he does eat works off almost straight away as he still insists on kicking his legs about when laid on his bed or the floor, he has not mastered crawling yet but we can see he is trying, he is however sitting longer.

We have just made contact with someone in England for the first time and their daughter is in her 40s, we hope in time we will learn a lot from this family as their experience will be invaluable to us, and gives us hope Harry will achieve what their daughter has.

March 2011

Harry is now 3 years old and has come through some bad times with his kidney but has done so with great courage and determination. He has proved so many people wrong and reached his milestones with ease.

Harry has a huge family support who encourage him and now attends a special needs school who in my opinion are the best. Harry is picking up sign language although it needs a little more work, he does enough to sign Car, Mummy, Daddy, thank you, and his name, for us to understand him.

Harry also has good coordination with his hands, and although he has not mastered walking unaided, he can with help with us helping him with his balance and we believe he will walk unaided one day soon. Harry brings happiness to everyone he meets and has the most beautiful smile.

Many of you have the same in your children and we would love to hear from you to share experiences.