Walking With Giants Foundation
Supporting Individuals and Families Affected By Microcephalic Primordial Dwarfism

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Jemma

Jemma

Picture of Jemma and mum (Tina) outside of No10 Downing Street

Jemma was born on the 4th of June 1984 weighing 3lb half an ounce and 40cm tall, no one seemed to know why she was so small.

She was only 10 days early, had lots of black hair, perfect and healthy. They all said she'd gain weight and grow, she didn't, she was just Jemma and we loved her.

Her brother Matt was born on the 6th of June 1985 weighing 8lb ten ounces and 60cm tall, Jemma just had her first birthday and now weighed 6lb. Having Matt around helped Jemma a lot, she learned to get on with things, when he started to walk and talk so did she.At times, like all brothers and sisters, they fought.

Jemma's brother Joe was born in January 1989, just before she started school, she loved going to school but was always eager to come home and feed her baby brother. Although at times things were hard. Jemma was a happy child and enjoyed her life. She continued through mainstream school and enjoyed majorettes in her spare time.

Things became more difficult in her teenage years as friends went off to do things she wasn't able to, she got quite depressed, that's when we found out about LPA and she finally got to meet people like herself, it helped a lot. From there Jemma got involved with a local charity and helped to set up a youth club for disabled teenagers, she knew how hard it had been for her through seniors school with a very limited social life. Matt and Joe started to help out as well which was good for them too.

Jemma eventually worked with me at a children's nursery, she helped to prepare their lunch and encouraged them to eat it, she enjoyed this immensely and so did they.Jemma passed away just after we returned from LPA in 2005, we were lucky to spend that time together as a family and with the special friends she had made there.

We are so very proud of all three of my children, having Jemma in our lives has affected how we think and what we do. Matt works with disabled young adults. Joe has continued to go to LPA every year and has made many friends. Other members of our extended family are also working with children as a result of their time with Jemma.

Our thoughts on the first ever Walking with Giants Convention

We attended the first ever WWG convention in October 2008, over the years we have attended several Little People of America conferences and to finally have one in this country for MOPD children is a dream come true. Sadly this came to late for our daughter Jemma, she passed away in 2005.

It is so important for these children and their families to spend time together, for a lot of families travelling to America to attend the LPA is too expensive, we were lucky enough to take Jemma several times but had to make the extremely difficult decision to leave half our family behind. With a convention in this country hopefully the MOPD families will not have to make that decision.

To watch these children meet others like themselves for the first time, to be able to run around and have fun without the fear of being picked up, knocked over or ridiculed is something all children have a right to. Young adults can sit side by side at a bar, parents and siblings can share there hopes, there fears, there dreams.

The other important thing about these conventions it that it enables the people with MOPD to meet specialists from all over the world, who have a vast knowledge of the condition who can investigate and advise on some of the very serious medical issues. Most doctors in the UK have never heard of or had any experience with MOPD or Primordial Dwarfism as a whole.

We are all looking forward to attending the next convention and are excited about what the WWG foundation is doing and can hopefully continue to do in the future.

Mark Tina - Jemma's Parents (UK)
January 2009

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