Vinnie Bubs

ABOUT VINNIE 

My name is Vinnie Edwards (well it's spelt Vinny, as Mummy preferred it this way, and to make it easier for myself to spell when I get older) I will be 3 this year - 2014, and in February this year I was diagnosed with Smith Magenis Syndrome.



When I was born my Mummy and Daddy were thrilled and overwhelmed when I came into the world, and so too were my two Sisters, Ella and Summer and my Big brother Fraizer. Everything was cool, I was being a normal baby, doing all the usual things that us babies do. As I started to develop, my Mum and Dad thought that my hearing needed a few tests, and that I was a late walker, and that I had not started to talk yet, not like my brother and sister (by the way, my Sister Summer, she is well funny, and she can talk for England) so I am hoping that when I get the opportunty to excercise my vocal chords, I will be a chatter box like Summer. 

 

In December 2013, I was admitted into Hospital with respiratory problems, at which time, I was due to have a genetic test in February of 2014. However, my Mummy and Daddy requested that the test be brought forward, so that when I went to the genetic clinic in February, I would hopefully find out, what support I needed.

 

My Mummy and Daddy were very brave when they went to see the Genetic Doctor, I wasn't in the best of moods that day, so I guess I played up a little, but I had my Auntie Daisy to the rescue.

 

Mummy and Daddy were informed I had Smith Magenis Syndrome, and when they were informed, their world was turned upside down, and were very upset at the time. I was still being Vinnie, and causing trouble, and giving out lots of V-Man smiles.

 

So their were many things to take in, and we had to get used to the fact that I would need 24/7 care (which I already get you know, I get a 1st Class service from my parents, brother and sisters, and family)

 

After this has sunk in, their were many areas that needed to be dealt with in order that my Journey with SMS, was one which helped me obtain all the support needed.

 

So my parents, when into 'Superhero Mode, and began to book the many appointments I needed, to ensure that I was getting everything that I required, but also check to see that I am healthy little boy, who needs a little help. So who did I need to see, well the list of appointments and check ups is endless, but here is just a few of the Teams, Dr's and Specialisits I need to visit, on a regular basis.

 

 

• Health Visitor​

• Speech and Language 

• Local GP

• Nursery

• Portage

• Medical Genetics Unit   

• X Ray / Urinary Tract Dept

• Paediatrics

• Paediatrics Eye Clinic

• Paediatrics children unit

• Audiology Services

• Ophthalmology Dept

• Maxillo facial Clinic