Vinnie was disgnosed on May 26th 2015 with a Progressive muscle wasting condition called spinal muscular atrophy type one. This means that in a short space of time he would lose the ability to swallow, to move and to breathe independently. By the age of five months he was using a ventilator and was tube fed and had stopped moving. In October 2015 he started a trial for a new drug called spinraza. This drug was meant to only halt the progression of the condition which normally kills children by the age of two years old. Instead of getting weaker he was getting stronger. Now he only uses his ventilator at night but still requires 24-hour care. He has no real independent movement and relies on a power chair to have any independence. He needs me to move him where ever he needs to be. We have an overnight nurse five nights a week to allow me to rest and get some sleep. We currently live in a two bedroom flat in Kingston upon Thames. To access our property we have to walk up 14 stairs as we are on the first floor. I have to do this whilst carrying a child who weighs 17 kg and is a dead weight as he cannot even lift his own head. I also have to carry all of his life saving equipment. Over time this has become increasingly difficult and now every day when I leave the property I risk mine and his life because if I was to fall it would be a very serious accident. I also have an 11-year-old daughter who has her own bedroom, Vinnie has his own bedroom And I have slept on the sofa for four years. There is no room for our overnight nurse and she has to sit in the kitchen so privacy is limited. in 2017 I asked the council to fit a platform stairlift to the property for me to get to Vinnie and his power chair up the stairs safely as we cannot get it up the stairs at present as it’s 100 kg. They refused us as they did not wish to spend the money on the stair lift when we needed to be moved urgently. We have waited three years for a property. Down my street there has been a fully adapted property sat empty for six years but the council refused to give it to me because it was too big for our family. Then two weeks ago I was told by a neighbour that there was yet again another property, this time matching our bedroom entitlement that had been empty for a month and no one had contacted myself or Vinnie’s care team. After hearing this I started a campaign called #GetVinnieGrounded highlighting the failings of Kingston Council and how they have left us to suffer in a property which is unsafe for Vinnie and his disabilites. After starting the campaign the council decided to contact me about the property in question and admitted that it was empty and it could possibly be suitable. The property would need extensive adaptations to make it our forever home and a safe space for Vinnie but with the garden being so large the extension that is needed is feasible. Our occupational therapist sent an email saying that the property is suitable for us and our needs long-term but would need adaptations. Currently in the borough of Kingston you cannot apply for a disabled facilities grant so we now face the challenge of trying to fight for the council to adapt the property or fund this ourselves. Now after weeks of arguing over suitable floor plans, the council have agreed a suitable extension that will meet Vinnie's needs as he grows. Our next step is to take this to planning commission so we can get the build underway.

We are raising money to ensure the new house is made suitable for Vinnie. This includes suitable flooring for his wheelchair, flat smooth driveway, his bedroom has custom made furniture for his life saving equipment so it it concealed and all of his medical supplies. Storage as everything is built in to our current flat. Kaydee, his big sister , has sacrificed so much so i would like to give her a bedroom she deserves.

It is also to make sure that we as a family have everything we need to start off in our new home as i currently do not even have a bed as been sleeping on a sofa for 4 years.

Here is a link to his own Facebook page where his life is blogged about so you can follow his story. It shows the struggles we are facing currently in our property.

https://www.facebook.com/groups/512091615614826/?ref=share

Thank you