On the 8 June 2015 after a very traumatic pregnancy and birth my beautiful grandson Tyler was born. He was so tiny, weighing only 500g (1lb 1oz) we all soon started calling him Tiny Tyler. Not knowing at that time how apt this name was about to become.

Tyler was born very small and premature, all the medical staff kept telling us his chance of survival was slim less than 5% but none of us would give up on him. Tyler had 2 lifesaving operations and stayed in for 6 and half months. He was discharged home with Ileostomy, on oxygen, NICU, tube and loads of medication. All of the above has now gone except he now has a gastrostomy (feeding tube in the tummy).

Tyler has a very rare form of dwarfism known as primordial dwarfism[some of the smallest people in the world have this condition], but there is more than one type, we do not know what type Tyler has. He is under many specialists so hopefully one day we will know. He may be the only child that has survived with this type.

Tyler is now a loving bubbly charming little boy of 4 years old. And is in need of a wheelchair, Tyler can walk but only over a short distance. Tyler has one leg shorter than the other and has a wedge in his shoe, he suffers with tired legs and cannot walk far. His mum and dad have to put him in a buggy to go to nursery which he HATES. Tyler will start school in September but he will miss out on going on any school trips because he cannot walk far. School can only push a child in a wheelchair therefore Tyler will miss out. Tyler also has a little brother aged 2 and a sister aged 1 my daughter finds it difficult to take them out as Tyler needs extra help. Wheelchair services agree that Tyler would benefit from having a wheelchair but unfortunately due to local funding policies they cannot help so we need to fund his wheelchair on our own.

Tyler is a true miracle and has shocked doctors from before his was born and is still doing so to this very day. Tyler has recently been referred to Great Ormond Street Hospital to manage his care as he is very complicated. He is also due to see a Professor from Edinburgh and two doctors from America, who are experts in the field of primordial dwarfism. Tyler baffles everyone medically everyday but he is a true miracle and we are so proud of everything he will accomplish in life. Things have been very difficult and the future will also be difficult for him in many different ways medically, emotionally and socially (we already are seeing signs of these struggles)

Thank you for reading this and for any help you can give.

You can follow Tiny Tyler’s Journey here.