Blurb written my Sebs mum (Imogen Adams)....
Sebby is our differentlyabled super boy who lives with a life limiting condition and unique set of symptoms as a result of his diagnosis (1p36 deletion syndrome). Consequently from birth, Sebby's challenges have been many and we keep a log of his story here for those interested in learning more about our tough little man.
Sebs is now 6. In the last two years, we have been working him really hard to help him to learn to bear some weight. With weight bearing abilities developing slowly, Sebby has now learnt to stand for really short periods (see the video below). He finds this really tough, however, we are seeing slow progress - which is still progress right!
Sebby's physio programme is ongoing and permeates everything we do. However, as a family, we wish to support him further with his physical development by raising some money and investing in some high tech physio equipment at home which the community team and NHS cannot provide for us. This would be in the form of an upgraded standing frame, a walking frame, a walking trike or even hydrotherapy for instance. All of the above would help Sebby to stand and then walk and would last him for many years to come in his quest to do what most children learn to do within months. Even if it takes him another 6 years. That day when he stands on his own two feet and puts one foot in front of the other will be worth the wait.
So... a few months ago one evening... myself, daddy Steve, God mum Liz, Uncle David and Uncle Davide thought it would be an great idea to tackle a BIG CHALLENGE (can you sense the panic in my voice?) So on behalf of our perfectly imperfect Sebby... we have been training since January to run the Jurassic Coast Challenge. 100km in one day! EEEKKKKKKK!!!!!!!!! Is that possible??? Two months into six months of training, we are shattered already, but seeing slow progress in our abilities which certainly keeps us going (sounds familiar ;-)). We are so blessed to be able to do this - to put one foot in front of the other - it really is the least we can do for our special super hero, Sebastian.
Our legs running to make Sebs legs stronger.
We have never dared to fund raise for our hero before. Embarrassing right? So it feels really strange to ask you all that if you feel you would like to help us in 'Sebs Legs' future physio quest, we would be so so grateful. Even the smallest of donations and any expressions of love and motivation throughout the next few months training and challenge ahead would be just wonderful.
With sincerest thanks and love from us all.
Sebastian Joseph Adams' family, God family and special mate Davide.
Here is that video if his current standing status!
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