Tuesday, 27 April 2010

Harry's Story


Please find above a link to a news story we have done with Harry to raise awareness for his genetic disorder.

We're so proud of Harry for doing such a wonderful job..

Sunday, 25 April 2010

Harry - St Georges Day Parade

Harry has had a brilliant day. As a Gallantry Award Holder, Harry met with HRH Prince Charles and Harry's hero Bear Grylls who is the Chief Scout. Bear took the time to sign a Bear T Shirt that Harry has and took along especially and even had a lovely photograph taken with Harry. He told Harry he was a star and a brave boy.

I would personally like to thank all the staff who made the day run so smoothly and also to all the Leaders from our district who turned up to watch the parade and were waiting to congratulate Harry as we left the Windsor Chapel.

Harry thinks today has been one of the best ever and he will have lots of special memories of such a brilliant day...

Friday, 23 April 2010

The media world

Well today has been so eventful... What started with an article in a local paper about Harry's genetic disorder has turned into him being in papers from as far as Australia, Spain, Italy, USA and our British papers too


We have even had calls from Magazines, radio & tv shows....

This I know is a good thing as it is helping raise awareness for Harry disorder but its just been a crazy, buzy day and my phone has not stopped ringing.....

and aslong as it highlights APS and the amazing work that Great Ormond Street Hospital do, then Im happy...

Thank you also to Great Ormond Street Hospital, First Choice Holidays, Pirates International and the Novotel, Birmingham for the weeks holiday Harry & I are going on a week from today....
One word sums it up perfectly

Sunday, 18 April 2010

Brimham Rocks

Took Harry, big brother Jack, myself & his daddy to Brimham rocks today. Harry had some pain in his groin area to begin with so gave him some pain relief and off we set. Brimham rocks is a natural area of beauty in North Yorkshire where there are huge rocks and boulders for people to climb on and explore.

Harry knew his own limits and climbed some boulders but could not manage some of the climbs and jumps that his brother could. He did however crawl through a small tunnel in the rock, though his neck was quite sore afterwards. We took plenty of rest time for Harry to catch his breath and rest. The exercise he has had today has done him the world of good, he was so tired afterwards and needed Dad to shoulder him back to the car. So proud he tried his best, climbed the rocks and boulders and had lots of fun in doing so.... Well done Harry....

Friday, 16 April 2010


Just been to the Doctors with Harry as he has had a funny sound and vibration in his right ear on and off for a couple of months now.... Turns out he has mild tinnitus, I expected this to be the case so wasnt shocked. The Dr did say you'd expect to find it in some one a lot older than Harry but given his disorder it maybe the reason for it. There's no treatment for Harry other than to monitor it and take note if we think his earing becomes impaired and then the Dr will refer him to the ENT department.
He suggested that Harry listens to some soft music at night to distract from the tinnitus.

Harry made me smile as on leaving the doctors office he turned to me and said with a big grin

"another thing to add to my list"

I love his outlook, he's my little star.

Thursday, 15 April 2010

Feeling Positive

Im feeling more positive today. Harry has just taken his diagnoses in his stride and its another thing he just accepts and gets on with. Only problem is remembering to give him his pain relief 4 times a day. Will set alarms on my mobile I think. Its only as we're still on school holidays, once we're back in the school routine it will be easier to remember, half a tablet morning, lunch, after school, then at bedtime.
Harry keeps reminding me through out the day so that's good. He is a star!!!!

Tuesday, 13 April 2010


Harry has been to see two very nice doctors today, a Rheumatologist and a Paediatrician who specialises in childrens pain management. Harry has been diagnosed with arthritis in his elbows, toes, fingers,Knees, he also has had his hips x ray'd as they suspect he has it there too due to the pain and limited movement on rotation inwards, this may explain his continuous leg pain.
The x rays from Dec 09 on his spine and neck show the bones in his neck have some degeneration in them. I was shown the x ray and its not nice to see the bones in your little boys neck crumbling which is the best way I can describe what I saw. Thankfully they assure me its nothing to worry about and is what they would expect to see in someone like Harry who has an premature aging disorder.
I was very brave and didnt cry in front of Harry... I must stay positive, he's walking, talking, happy and loves life and I have to remember this but the word Arthritis makes me imagine an elderly person not my happy 11 year old boy.
So from here its keep up his exercise and his hydrotherapy to keep his muscles strong and to take 1/2 a paracetamol 4 times a day or ibuprofen 3 times a day depending on his pain discomfort. I dont like the idea of Harry taking pain relief everyday but it beats him being in pain and discomfort for everyday.. The Rheumatologist will see Harry again in Sept..

Saturday, 10 April 2010

School Blazer

Took Harry to the uniform shop for his blazer for high school.. The smallest one they had for Castle Hall was a 30' which swamped Harry. He tried on another school blazer which was a 28' the smallest blazer they do in the shop..... This also swamped Harry... They informed me they dont make them any smaller. Hopefully they can order me a 28' but the orders have already gone in.... Fingers crossed they can get one and we will have to turn to Grandma to take up the sleeves and nip it in at the waist... The major problem being is the shoulder pads they insit on putting in blazers... and as Harry has very tiny collar bones and is very narrow across his shoulders and back the blazers look odd on him.. On a lighter note it was lovely to see him in a blazer and he did look very smart..

Thursday, 1 April 2010

Orthodontic - Teeth

I had a lovely letter from Mr Cook, Consultant Orthodontist, following Harry's appointment with him back in March..
As we already know Harry does present with a potential for quite severe overcrowding in both his jaws but thankfully no more intervention is needed at this time. Harry found having 4 teeth removed under general anesthetic quite upsetting last time and also with the failed incubation Im understandbly more nervous too as any future intervention requiring Harry to be incubated will mean he needs to be near the paediatirc intensive care unit to keep an extra eye on him. This is because Harry has an extremley small mouth & jaws. Harry doesnt have as many teeth as a normal kid his age so its a waiting game to see if and when they will come through. Mr Cook informed Harry that quite simply he has 'too many cars for the carpark' which is ironic as he does not have all his teeth through yet. Harry will no doubt have a long road ahead of him in terms of his teeth but he is being looked after by a group of amazing dentists and Orthodontist specialists so for the moment I am happy. Harry will see Mr Cook in 18 months time to see where we go from then.