2011

Harry has had yet another busy year, aside his different hospital appointments, he's also got up to some adventures. He spent a long weekend with Hayley in Bexhill on Sea which included Zumba, a psychic event and a parachute jump.. (Harry didnt jump, we just watched!!)

Hayley visited us here in Yorkshire, which was fun on the Canal boat, which was seen on Hayley's documentary on Channel 5's Extraodinary People.

Harry has raised money for both the Progeria Reunion and for Great Ormond Street Hospital of which he is a patient.

Harry & Hayley also travelled to Russia, what an adventure that was!! but a worthwhile visit all the same.

October was the Progeria Reunion and Harry met up with all his friends, including Christian, who sadly passed away from Progeria in December. Harry was so upset as this was his first experience in losing one of his friends who are so very special to him.

Harry helped turn on the Christmas lights in Huddersfield which was a great evening.

The big announcement of the year was that Harry will be representing Yorkshire by carrying the London 2012 Olympic flame on the 25th June 2012.......Watch this space..

Harry's next big milestone will be turning 13 in February 2012. I cant believe my little man will finally be a teenager...Wow

London 2012

Yesterday 8th December was a very exciting time in our home, Harry has been succesful in the nomination process to be a torch bearer in the Olympic Games in London 2012. Harry received his conditional offer and we are so very proud of him. Harry will get his moment to shine on Monday 25th June 2012



What an amazing feeling knowing that our son will be part of British history and represent his town, community, and most importantly family & friends.

OWN Network – Mystery Diagnosis – Too Young to Be Sick with Harry Crowther & Sadie Mills Jones – Achalasia – More Behind the Scenes

OWN Network – Mystery Diagnosis – Too Young to Be Sick with Harry Crowther & Sadie Mills Jones – Achalasia – More Behind the Scenes


A short clip of the film Harry made for Mystery Diagnosis back in October 2010

Moscow, Russia

Back in October, Harry, myself, Hayley & Kerry took a trip to Moscow, Russia to appear in a programme about Progeria. We met a 16 year old girl and a 20 year old young man with yet another believed form of Progeria which differed very much to Harry & Hayley's form. It was a interesting vist and it was great to visit Russia for the first time even if it was freezing!!!!

You can watch the programme in full at the attached link

Christmas Lights

 

Very Proud of Harry tonight as he represented Mirfield & Huddersfield in switching on the towns Christmas Lights along with 3 other inspirational children, Cobie, Callum & Ben. Well done so very proud of you

Teeth!!!

With Progeria comes a small mouth & jaw which leads to severe over crowding of the teeth. As Harry's Orthodontist puts it " Harry you have too many cars in your carpark".

We've just had another visit to the Orthodontist and Harry has one more baby tooth to loose and his top 2 canine adult teeth have absolutley no room to go anywhere so they will burst through out of the top of his gums on both sides. This means that Harry will feel some uncomfort and look odd until they are fully through and then they will be removed. You can already see the huge white teeth just below his gums as they bulge and its only a matter of time before they make there unwanted apperance.

Harry faces years of visits to the dentist and Orthodontist to try and resolve his overcrowding.

He will at some point get fed up of this Im sure and then the decision will be Harry's as to wether the work in his mouth is to help his apperance on a cosmetic level or its a need for him to be able to eat and function etc.

Only time will tell!!!

What I will say is that his dentist, Esther and his Orthodontist, Mr. Cook are so fantastic with Harry. Never rushing him and answering any questions he has and they always take time to talk to him and put him at ease. Im so glad Harry does not have a fear of the dentist!!!!

Reunion

From October 27th to 1st Nov our family attended the 2nd UK Progeria Reunion held in Kent.
To see Harry's face as he saw all his friends again was amazing & what was equally amazing was that Harry's dad John his big sister Emma & big brother Jack came too. Team Crowther sharing this reunion :)

We all said hello to little Lucy from Ireland & her mummy & daddy and we welcomed Dean from Birmingham & his family.
Lucy is the youngest with Progeria at just 2 years old & Dean is the oldest at 20 years old.
Dean was so inspiring as he drives a car, has tattoos & has a stunning girlfriend, Emily.
This gave everyone hope that these amazing children can lead ordinary lives. We had a great few days with visits from various animals & wizard of science & fire eaters all topped off by an amazing halloween party with a fantastic live band. Blues Brothers Little Brothers.

Thank you again to everyone who helped donate to make this reunion possible & much love as always to Hayley & gang for organising yet another wonderful reunion.

Will finish this post remembering the children who could not join us physically but were there with us spiritually & whose mums attended the reunion also xxx

OWN Network – Mystery Diagnosis – Too Young to Be Sick : Case of Harry Crowther– Atypical Progeria Syndrome

OWN Network – Mystery Diagnosis – Too Young to Be Sick : Case of Harry Crowther– Atypical Progeria Syndrome

Hernia!!!!

I took Harry to the doctors yesterday as he's had a small pea sized lump above his belly button, which over the last 2 weeks has grown larger & is painful to touch.
As I suspected Harry has a hernia.
So the doctor has referred Harry to be seen by a surgeon.

Catch up!!!

Harry has enjoyed his 3rd week back at High school, now in year 8!!!!
He's very much looking forward to the Progeria Reunion in a couple of weeks, to catch up with his friends from all over Europe whom he met last year.


Noticed him limping today, said his legs were paifull. Horrid arthritis, wish I could take it away from him....

On a brighter note...We've some exciting news and we will reveal all soon. So watch this space.

A weekend of Fun

Harry & I flew to Gatwick on Friday 29th July & met with our dear friend Angela, who lost her beautiful daughter Claire to Progeria. We then hopped on a train to Bexhill on Sea where we were met by Hayley, Kerry & Mark. We then went for a beautiful lunch and a play on the beach. Friday evening Harry & I attended a Zumba Festival with Hayley, Mark & Charlotte to raise money for the UK Progeria Reunion. Harry certainley enjoyed the dancing.

Saturday 30th July. Harry & Hayley had some photos taken by the media with a view to running a story on their friendship. We watched the Bexhill carnival and Mark took Harry & Hayley to a fun fair, where more phots were taken. We shopped a bit and chilled a bit then in the evening we attended a Clairvoyant evening with Hayley, Kerry, Janie & Angela, again to raise money for the reunion.

Up at 6.15 am Sunday 31st July a sunny morning to head to the aerodrome where some very brave but equally crazy people did a skydive all to raise money for the reunion.

Monday 1st August we had a day of rest and relaxation, and Harry & Hayley playing in the Wii together, then to the train station to say goodbye. Flew from Gatwick to Manchester. What a lovely weekend Harry & I shared with very special people.

Scout Camp

Harry has been on Scout camp since Friday evening & Ive just received a post on my FB which I thought Id share, which sums up the fun Harry must be having.

"Well.. Harry slept under the stars in a Bivvy, which they made themselves out of trees, sticks and leaves, enjoyed a full cooked breakfast made by themselves, enjoyed loads of wide games, chopped wood the keep the fire burning, went on the water slide, had a lovely chicken casserole for tea and spent the evening doing lots of boy things. I wonder which of you had the most fun ?. As you might be able to tell, Harry and the scouts are having a great time. I think they will all come home happy but very tired, afterall it is soooooo tiring having fun!!"

Thank you to Jo (also a Scout Mummy) for sharing this with me.

Missing Harry so much but know he is having amazing time. He is home on Tuesday and then on Friday we fly to visit Hayley Okines and her family for a long weekend, which we are both so excited about..... More to follow

Physiotherapy

Harry has seen a new physiotherapist today and he's still very stiff in some of his joints, especially his legs and the right side of his body is weaker. He's been given some strengthening exercises to do and is booked in again for some more hydrotherapy. Need to invest in a gym ball so Harry can learn to balance on it, therefore strengthening his core muscles and making his right side stronger. Harry is also having another hand splint made for his left hand and he will wear his splints for 1 to 2 hours per day to support the position of his hands.

UK PROGERIA REUNION 2011

We are currently helping our great friends the Okines family, fundraise for the UK Progeria Reunion 2011 to take place in October in Kent. We are busy organising sponsored toddles, raffles, leg waxes and auctions here in Mirfield, West Yorkshire. We are looking for generous people and companies to kindly donate gifts, prize and vouchers to support the fund raising efforts. If you can help please contact me via this blog or on my work telephone number, Wellhouse Pre-School 01924 493216
Thank you so very much in advance
Sharron, John, Emma, Jack & Harry xx

Harry and the Olympic Torch

A very warm thank you to Cllr Martyn Bolt who has put forward a suggestion that Harry be nominated to be 1 of the 8,000.00 torch bearers to carry the Olympic torch next year in time fot the start of the 2012 Olympic Games. This would be an absolute honour for Harry and us if if was succesful in his nomination. Thank you to the Mirfield Reporter for the lovely story they have printed and lets hope all of Mirfield get behind their Ambassador, Harry and nominate him to carry the Olympic flame.

Brunel University & Alton Towers

We visited Brunel University for a Progeria Conference where we met & listened to Doctors, Scientists, Researchers & Professionals discuss Progeria and all the science behind it. We shared the day with the amazing Hayley Okines and her amazing family. Hayley very bravely gave a thank you speech to the entire room. Hayley has HGPS which differs from Harry's APS though they do share similarties.

Next we all travelled together for a wonderful day at Alton Towers where we filmed with Hayley for her latest documentary......watch this space!!!

It has been an amazing couple of days for both Harry & Hayley to share happy memories and have lots of precious fun together. Harry & Hayley will be friends forever xxx

Mystery Diagnosis

We have now recieved the dvd of Harry's story to be shown on Discovery Health. The show is called Mystery Diagnosis.

We have watched it and are so pleased with the show. Thank you to everyone involved at One True Enterainment and the Oprah Winfrey Network for allowing us to tell Harry's story of his diagnosis of Atypical Progeria Syndrome

We will add the dvd to my blog page soon

12!

Happy 12th Birthday to my little man xx

2011

Its been a while since I last posted, so here's an update. Harry's had 24 hour tapes fitted to his chest to monitor his heart. He also has an ECG Treadmill coming up again to monitor his heart. Will pos results once known.

X Ray results came back as expected showing the de generation of his bones in his hands, feet and collar bones. His x-ray of his jaw showed that the findings were classical of a child with 'PROGERIA'. Small, over crowded etc.

Hoping to hear some news from DR Wilson at Great Ormond Street Hospital to see if Harry will be eligible for the trials in Marseille. I really hope so. Children with Classical Progeria are seeing great results and I wish this for Harry also.

Harry is continuing with his hydrotherapy (when the pool's not shut that is) Also awaitng an appointment for his right hand splint. He doesnt like wearing his left hand splint as it gets itchy and makes his hand sweaty but Harry knows its there to support his hand.

Happy New Year and thank you for continuing to support Harry