C/O 65 Waverley Street
Castleton
Rochdale
OL11 2TS
United Kingdom

NB: this is a forwarding address for the Pal, we do NOT disclose home addresses

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Harrison B's Parents/Guardians

Elizabeth

Harrison B's Siblings

Ellie (over 16)

Harrison B's Interests

Lego, Football (especially Manchester United), Mike the Knight, Wii and DS.

Harrison B's Favourite Colour

Red

Is Harrison B able to read?

Yes

Is Harrison B able to use hands?

Yes

Is Harrison B visually/hearing impaired?

No

Does Harrison B suffer from any developmental delay?

Yes

Developmental delay?

Delayed in language and communication.

Story written 2011

Harrison is known as Harry.

Harry was born 5 weeks prematurely and spent three days in special care. He was then in and out of hospital with feeding problems, reflux and infections. At 18 months old he saw an immunologist and was diagnosed with an immune deficiency. He then started 3 weekly hospital visits for immunoglobulin therapy but was still in and out of hospital with infections.

Harry was in hospital aged 3 with ecoli septicaemia and was very sick for 10 days. It was also discovered he had Epstein Barr virus and had a months treatment with a chemo drug called Rituximab which wasn’t very nice at all.

Harry also has behavioural problems and was diagnosed with ADHD and then when he started school it was picked up that he had developmental problems and was diagnosed with autism.

Harry started having subcut immunoglobin therapy and I was trained to do this even though I hate sticking needles into my child.

Harry was referred to the geneticists because of his range of problems and they have found that there is a problem on his x chromosome so are doing more tests. The genetic testing has been very stressful for the whole family as I may carry the same gene and may have passed the abnormality onto him so feel so guilty. Ellie, his 15-year-old sister, will also need testing as this could impact on her future plans to have children.

Harry is very small for his age and has now been referred to the endocrine clinic as he may need growth hormone so the daily battles still go on.

Update 16th March 2012

I'm sorry Harry's story has not been updated but we have had a rough time as a family over the last nine months. I would like to thank everyone who has written and sent gifts to Harry as they really do cheer him up.

He loves his Dottie teddy and he takes it to bed with him every night. Whenever I am giving Harry his treatment or if he is in hospital, Dottie teddy always has to be by his side for a cuddle!

Usually summer time is better for Harry as there are fewer bugs for him to catch but last summer Harry was ill with shingles, having it three times by November. This meant quite a few stays in hospital.

Due to the gene defect Harry has, he has failed to gain weight and grow, so we started daily growth hormone injections at the end of last year. It was really hard for Harry having to have yet another daily treatment but they did help.

In February, Harry's consultant asked us to meet with another consultant specialising in genetic disorders. The outcome of the meeting was that they think Harry could have a rare genetic disorder called Cartilage-hair Hypoplasia and we are now waiting for the results of the testing. In the meantime, the growth hormone injections have been stopped because they can cause tumours in children with Cartilage-hair Hypoplasia.

Harry continues to have immunoglobulin therapy in hospital every three weeks and he has just been discharged following his 4th stay in hospital in the last four weeks due to a strep throat infection. We are hoping to stay at home for a bit now.

Update 1st June 2011

Harry is unwell and in hospital now with a non-blanching rash. He's so fed up.