Keep Samuel Smiling - Equipment

Keep Smiling Samuel

Samuel was born safely at 35 weeks after having a high risk pregnancy which meant a month long stay in hospital prior to birth. If only we knew this was just the beginning!

After spending 11 days in NICU he finally arrived home safe and sound, a healthy little boy. However, four days later he developed neo-natal meningitis (Strep B) with no signs of fever, rash, vomiting or any indication that he was in such a serious condition.  In the morning he was rushed to A&E and had to start a 3 weeks course of antibiotics. By Friday, after his MRI scan, the doctors mentioned that there were signs of serious brain damage but they could not predict how this would effect Samuel in the future.

We made it back home after three long weeks but had to go back to hospital only one week later as his head circumference had grown more than normal.  He had now developed Hydrocephalus which is a build-up of fluid in the brain.  Little did we know that he also had septicemia (which we had just caught in time) and needed a futher three week course of antibiotics. 

Samuel was then sent in for surgery to  have a temporary valve inserted to the top of his skull to drain the excess fluid, however this started to leak and was rushed to hospital for the insertion of a permanent VP Shunt, this is a permanent drain from his brain to his abdomen that sits under his skin.   We have to watch for any signs of infection or failure of the VP Shunt which is a concern when he presents any sign of illness.  As Samuel is unable to communicate, we have to be extra vigilant in watching for signs of shunt failure as we would have 48 hours to get a replacement.

Samuel who is now 4 years old, has shown the impact of this dreaded infection and was diagnosed with full body Cerebral Palsy with a hypotonic trunk when he was 2 (which means his four limbs are very stiff due to high muscle tone but his torso is weak and floppy due to low muscle tone). This severly affects his ability to move around and cannot  sit, crawl, stand or walk unaided. If he is left with no intervention therapies, he would need hip and spinal surgery in the future. 

Samuel has feeding issues as he has problems swallowing food and continues to require food that has been pureed.

In the future Samuel will need mobility devices and moving harnesses . We will also need communication aids to help him communicate with those around him as the cerebral palsy has affected his ability to speak. Currently we are reviewing Eye Gaze technology, which uses the tracking of eye movement to be able to control a cursor on a screen giving him the ability to play and communicate using apps.

As you can see Samuel is in need of constant assistance and requires specialist therapies and equipment to do any basic tasks. 
 
So far the NHS has been amazing in providing the necessary treatment, equipment and therapy however now that he is getting older and can see the impact of his disability, we need more specialised equipment and intensive therapy that is not provided through the NHS and needs to be funded independently.  So to provide Samuel the best future, we need your help.

We will also need to adapt and change the way we live and have to constantly think about Samuel as he grows bigger and heavier and how this will impact on daily living.

If you can donate in any way, however small,  towards keeping Samuel smiling and support us on this journey, it will be greatly appreciated.

You can also help by sharing this page and by praying for us. (if you are the praying type)

Here is an updated list of equipment / therapy still needed:

- Smartbox Eye Gaze communication Grid & Software - recent quote £5200

- Innowalker - £10000

- Sensory & Special Needs Educational Toys

- Specialist bibs

A massive THANK YOU to those who have supported us so far.  Here is a list of the equipment and therapy we have bought so far:

- Perspex tray with velcro to attach toys
- Firefly GoTo Seat x 2
- Firefly Splashy seat
- Hydrotherapy pool
- Seizure monitor
- Sleep monitor camera
- Small Mac switches
- Specialist bibs
- Eazyhold

Let's Keep Samuel Smiling, together!

10% of all donations will be given to charities or local families in the same situation who are in need of support.

Donated to the following so far:
* Luka's Smile
* Margaret Coates Autistic School play equipment
* Time is Precious
* Edie's Scoliosis Suit

Donations

  • Jane Smith Seascapes 
    • £25 
    • 6 mos
  • Anonymous 
    • £200 
    • 12 mos
  • Rachel Atkins 
    • £50 
    • 23 mos
  • Anonymous 
    • £100 
    • 29 mos
  • Anonymous 
    • £100 
    • 30 mos
See all

Organizer

Gillian Hutt 
Organizer
Bath, South West England, United Kingdom
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