About Finn

Finn was born on 4th February 2005, seven weeks early weighing 2lb 4oz, we could fit her in the palm of our hand during the first few weeks. At 9 weeks she was able to come out of hospital weighing 3lb 5oz she also had  a tube which passed through her nose into her stomach to help her eat.

After 19 months Finn had a gastrostomy tube put directly into her stomach which she still has to help supplement her calorie intake as she only eats very small amount of food.

When Finn was 2 years old she had numerous tests to find the reason for her slow growth, at this time we also began to research various growth disorders with the help from other family members we came across a website primordial dwarfism. COM. In the links section of the site was a link to  medical journal which contained research about the disorder in this there was a picture of a little girl who was practically identical to Finn.

The name of this disorder is Majewski Osteodysplastic Primordial Dwarfism (MOPD) Types II, it is a very rare condition of which there are around 60 people in the world and only 4 diagnosed cases in the Uk. There are many issues associated with mopd type 2 including brain aneurisms, scoliosis of the spine, loose hip joints and the main one being very short stature the average size of a fully grown person being 3ft tall. Many adults suffer from similar conditions but because of Finns size some of these issues could be potentially fatal.

Finns diagnosis followed shortly afterward from a specialist in Canada. It was a huge relief to have a solid diagnosis as we can now understand Finns needs for the future. We are now able to have brain scans every year to reduce the risks of aneurisms and hip and spine x rays keep an eye on her joints to treat any discomfort that she may have.

Finn is now a bright and independent 3 years of age, she loves peppa pig the colour pink, having stories read to her, dressing up and despite her size has developed a big personality and character.

Finn has achieved good communication skills and is at the same level as children her age. She has begun to face issues related to her size which is 2ft 1 inch and 14lb in weight.

Some of the problems that Finn has started to come across are getting up stairs as her legs are not long enough for the steps and she needs help to come back down, she needs the light switches and door handles lowered to enable her to reach them and a big issue that we have found is the size of the toilet and sink Finn needs smaller versions of both of these.

We are raising money to help Finn go to America in June to meet other people with primordial dwarfism (type 2).  The little people convention is a yearly event where little people from all over the world with all types of dwarfism get together for one week and learn about each others lives Finn has met 2 other children with mopd type 2 who live in the Uk and we would love her to be able to go to America in June to meet everyone else at the convention.

There are 4 specialists in mopd type 2 all of which of which attend the convention every year to speak with families and research more into the condition.  Any information that we can gain about this rare condition will benefit Finns life in the future.

This year the specialists have found proteins and hormones that are missing in people with mopd type. At the convention this year they are hoping to get as many people as possible together to help the research further and we would love Finn to be able to take part.
 
THANK YOU FOR TAKING THE TIME TO READ THIS