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