Rooting For Rowan!

The Comets Story 

(from when we knew the basics of his needs, when I was pregnant. He is now 15months old)

Find Rowans journey here:

Rooting For Rowan - Facebook Page! 

Meet our son, Rowan. He has a rare disability called Sacral Agenesis (No tailbone), his ankle and toes are locked in position, and his bones in his legs are short. He also has one working kidney, a ectopic tube which goes into the wrong part of his bladder, the tube also has a large cyst like growth on it. He is generally built differently from his hips down.

For now, we are faced with frequent hospital visits in London, as well as our local hospital. This year he will be facing multiple operations. He will need walking aid, they predict a wheelchair but we want to encourage him to start with a walker, before he "outgrows" his legs. He is 9th percentile on the height chart due to his legs growing slower.

Any help given will go towards equipment he will need to get him around and visits/stays in hospitals. We hope to give him a full, happy childhood and with your help we have a better chance to achieve this.

My friends and family SMASHED our £1000 goal last year, and it has helped us loads with our appointments.
I have been looking at mobility equipment and realised that it's costly. I have been advised (By a lovely lady who briefly spoke to us about mobility assistance at GOSH) the NHS basic ones are just that, generic and basic. Through this year we will be doing a good few trial and error with walkers, chairs, aids in general to encourage his mobility.
On top of it we have operations and treatments which will require us to stay in London and Stanmore, although the rooms are free, living from home isn't.
There will be a lot of unknown this year. I understand £10,000 is a lot, and I really don't expect to reach that, but it's so I don't underestimate costs and keep putting up the goal, and looking cheeky in doing so. Of course if we did reach an incredible amount it will be saved for Rowan to help him through his teens (£10,000 will definitely last a good while).
I would greatly appreciate some shares.
We obviously put a monthly amount away into his account too. We just want his battles to go smoothly.
Please be aware, it will be used towards aids that he may not eventually use. He loves his Bumbo wheelchair (That everyone, again, help us get) but now he is becoming frustrated being in the chair for too long. We hope to get a walker made for him, for after his open surgery on his legs, let him have some mobility until he outgrow his legs and can't bare weight on them.
We have also discussed and deeply thought about amputation and prosthetics, to give him the gift of walking and standing tall. But this will be an in depth talk with his consultant in Stanmore, and may even be in a couple of years.

This year isn't only just for his legs. We have consultant appointments at GOSH to discuss the plan about the growth on the ectopic tube that goes to his bladder, and as he has no bladder control (not unusual for a baby, but he constantly trickles out urine, it has been observed) he may have to be catheterized, but with a constant threat of urine going back into his only working kidney and threatening him to become sceptic, it may be a good option. We will also be monitoring his cystic kidney, making sure no more cysts grow and enlarge it.
With all above he still has an operation planned for his boy bits as he has hypospadias.
So ALOT is going to be happening, and as we don't have an end date, I wasn't sure what to put as a goal.

Facebook Fundraiser page. 

Thank you for reading, even if it is just to read the story of our boy, we appreciate your time.