Donate to help with Seren's medical equipment

Hi. I am Lauretta. I am Seren's grandparent.

This is Seren Grace. She is 4 years old.

Seren was diagnosed with a condition called TBRS (Tatton-Brown Rahman syndrome) when she was 2 1/2 years old. We noticed Seren was not hitting any of her milestones, she couldnt hold her head up until she was over 1 year old. She didn't roll over or smile. She then began to have seizures which often results in her requiring CPR. She had had multiple tests with many different doctors on various hospitals, where a Genetics test unveiled TBRS.

When Seren was diagnosed there were only 250 in the world with TBRS.

TBRS can cause developmental delay, overgrowth, seizures. It can be different with every child.

As a family we did not realise how difficult it was for parents of children with disabilities to access equipment that the children need on a daily basis. The NHS/Government will not help with funding. Its a postcode lottery.

You have to fight for everything which is unfair as every child should have the same access to the equipment they need daily to help with their development.

As soon as you mention disability or special needs when it comes to equipment, the price increases by thousands.

Seren currently does not walk. She is non-verbal and has no awareness of dangers around her. She is the size of an 8 year old and is in desperate need of a specialised car seat and pushchair because of her size and weight. As these are specialised products they cost in excess of £5600 which as i said previously NHS/Government will not assist with due to my postcode.

We have spent many hours on the phone to then pleading for help but they will not budge. We have even spoken to our local MP.

We are trying to raise any money we can to allow me to purchase these essential bits of equipment myself.

Seren currently has a lot of medical intervention including 19 health proffesionals accross 5 different hospital trusts. This includes regular physio. Salt occupational therapy, neurology. Genetics, dietition, orthetics, orthoptics, lycra intervention, wheelchair services, cardiology, immune response, muscle team, development delay specialist. Epilepsy consultant.

I would like to thank you for your time in reading this and really appreciate any help whatsoever.