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

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rima01 wwgf 2008 annual convention

Rima was transferred to the Queens Medical Centre (QMC) in Nottingham and put under the care of Mr. Punt who was a specialist neurological surgeon. He diagnosed Rima with having a very rare condition called Moyamoya syndrome in 1999. In August 1999 Rima underwent an operation called the EDAS (encephaloduroarteriosynangiosis) procedure on both sides of her brain. After the EDAS surgery, Rima suffered more strokes and she was left with permanent disabilities including the inability to walk, eat/swallow or talk. It took 2 years for Rima to make some recovery from the surgery and she started to walk again in 2001. Her speech and eating ability never came back and so communication was purely from facial expressions and body language and feeding was done through a gastrostomy.

Rima defied all odds as she began a new life and a new way of living. Despite all that she had endured and sustaining life limiting conditions she was a very happy girl who loved going to her special needs school where she settled in her own way in everyday life.

We were told that Rima was the only child in the U.K. with the Moyamoya condition and doctors were still working on Rima diagnosis to find out why she was of small stature and not growing like a normal child of her age. Finally in 2006 with Rima now the age of 10 but the size of a 3 or 4 year old, she was diagnosed with having MOPD type II (Majewski osteodysplastic primordial dwarfism type II).

In 2007 we were introduced to a couple from Nottingham U.K. who have a child of the same condition as Rima, MOPD type II. It's hard to describe what it felt like to meet this little boy and his parents as for so long we thought and were told that Rima was the only child in the UK with her condition. It was a relief in the sense that we had met people who could really understand our concerns and feelings. Through this new and unique acquaintance we found out about another little boy with primordial drawfism named Alex and his parents John and Sue who had set up the charity called WWGF (Walking With Giants Foundation). We decided to get in touch with WWGF and were invited to the first WWGF convention in 2008 where we met other children like Rima and there families from around the world. At the convention we also had the privilege of meeting doctors and specialists from the UK and USA with whom we had the opportunity to discuss Rima's condition and learn more about MOPD type II. Our lives changed with so much information to understand Rima's condition and how to improve her life. It was nice to share the experiences we had been through with parents of MOPD children from all around the world. The most important thing was Rima meeting other children like her, same size and conditions as her which made her feel that she wasn't alone. The bond made between the children was amazing, we just wish that Rima could have met them sooner and not after 11 years, however, Rima enjoyed the last 2 years of her life knowing about the WWGF.

The WWGF have helped us so much and without them we would not know what we would have done or how we would have coped.

Rima became very ill in September 2009 after suffering a hemorrhagic stroke. Her condition deteriorated and was once again referred to the QMC. During this time Sue and John from the WWGF were in touch with us everyday and made several visits to support us. Their support gave us strength and made us stronger everyday. They spoke to Rima giving her strength to fight for her life till the end. The WWGF also helped financially so that we could spend the precious last few weeks at Rima's bedside.

Sadly, Rima passed away on 7th Nov 2009. Losing Rima was heart breaking, the pain of losing ones child surpasses any other pain we know of. Even after our great loss the WWGF have been a tower of support, without which we would not have been the same.

We attended the WWGF annual convention in August 2010 without Rima, which was extremely difficult but seeing the other children like Rima at the convention helped with our bereavement. We are so grateful to Alex's parents Sue and John, and all the team of WWGF who initiated and founded this worthy charity to help children like Rima and their families to understand and come to terms with the rare condition of MOPD.

Our sincere gratitude to the WWGF for their love and support through what has been the toughest time of our lives.

Rima's parents - Arun and Sima Sudra.
December 2010

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