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

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About Us

The inspiration behind the Walking With Giants Foundation came from the parents of a young boy called Alex Connerty from Liverpool England. Alex was born in April 2005 and was initially diagnosed with Majewski Osteodysplastic Primordial Dwarfism Type II (MOPDII) in May 2006.

Due to the lack of information; and being advised by local doctors that Alex was thought to be the only child with the disorder here in the UK; Sue and John Connerty, set out on a journey that would change their lives positively forever.

During this journey, they were helped by massive public support from the people of Merseyside; and from people up and down the UK.

In addition to this support, if you listen to the Connerty's account of their journey, they will add that the inspiration for the Foundation was not an original concept; and their inspirations came from befriending and meeting a very special woman called Elizabeth Hale from America.

In 2006, Elizabeth's daughter Chloe was also initially diagnosed as having MOPDII. Like all parents of children with Primordial Dwarfism when they are first diagnosed, Elizabeth and her husband Tom, like the Connerty's they felt they needed to know more; a lot of questions asked by parents are left unanswered due to the rarity and mysteries relating to the condition.

Elizabeth, Tom and all their family did what most of the other families did before them; and like what the Connerty's did after her. They went on a mission to find more information about the condition and other parents of children with Primordial Dwarfism.

The start of their journey is similar to most of the recent families that have children with Primordial Dwarfism; they searched the internet due to the lack of information from doctors and consultants and found a web site called PrimordialDwarfism.com.

This site proved to be so beneficial in educating parents and making initial contact with other parents and it is a credit to the creators; Douglas and Monica White and Jackie Kritzeck. These are parents of two older children with Majewski Osteodysplastic Primordial Dwarfism Type II; Danny White and Hannah Kritzeck.

Within the first thirty minutes of reviewing the site, it becomes apparent to the new parents that these parents and children along with several other families who are registered on the site, try to meet once a year at an annual convention arranged by the "Little People of America Organisation". This is the only place in the world that individuals affected by MOPDII along with their families get a chance to meet each other, exchange stories and get crucial advice.

When speaking to the parents of the older children; one thing they say above anything else is that the annual get together is probably the most important thing in these children's lives.

It allows them to meet individuals with the same conditions as themselves. It makes them understand and realise they are not alone; it allows them to stand shoulder to shoulder with their peers and it gives them a sense of freedom, identity and happiness; it also eliminates the feeling of being left out and different.

Most of the children make friends for life with the other children that attend these meetings/conventions; one American parent explained to the Connerty's:"It fills her with happiness to see her children play with similar sized children and even more to know these children will not let their conditions get in their way".

For the Hale's, the Connerty's and all the other parents this was something they all had to do for their children (and themselves); attend the next Little People of America convention (Seattle) in July 2007.

By October 2006, more and more families who had just been told that their children now have a form of Primordial Dwarfism found the site; and before you knew it, there where emails flying all over the place.

The main topic was "Are you attending the convention next year". Most of the family said yes but they have to review their finances nearer to the time. Some families said they would never be able to due to the costs involved.

This is where Elizabeth Hale came into the picture and why the Connerty's call her one very special and unselfish individual; and in one other sense, created a modern day miracle.

Elizabeth had the vision to create a Charitable Organisation called The Potentials Foundation. She wanted to help the parents who could not afford the costs of traveling and attending the forthcoming convention in Seattle and all future conventions. She also set about plans to raise funds for any emergencies these families may encounter in the future; medical costs, adaptations to the home, specialised equipment, financial hardships.

So much was done by Elizabeth Hale in a short space of time; and by the time of the convention, she had assisted in some way to helping the majority of the American families attend the Little People of America Convention in Seattle in June 2007.

For John and Sue, what they witnessed in July 2007 when they saw all the children playing and mingling together was nothing short of a miracle. John recalls seeing Alex play and interact with children and adults like never before, for the first time in Alex's life, John and Sue did not have to worry about average size children being to rough with him or leaving him out. It's something they treasure indefinitely.

Both Alex's parents testify that all the children/individuals recognised that they are no different from any one else. For the short period of time they were all together, they did not have a care in the world, there were no boundaries, no differences, no stares, and more than anything in the world: they knew they were not alone.

For the Connerty's, and all the other parents along with the children/adults affected by MOPD, this is one of the foremost issues that will determine these individuals destiny and mental well-being. By meeting regularly and keeping in contact, they will will know they are not alone, they will know they are not different; they will know by meeting older individuals affected by MPOD that nothing will get in their way, they will reach their full potential in life with the right support and encouragement

On returning to the UK from America, the Connerty's promised themselves that if the opportunity to create a similar organisation here in the UK came up, they would do everything in the power to do so.

This opportunity had now arrived and on the 15th January 2008, the Walking With Giants foundation was created; it has been a long haul in setting up the foundation, but the Connerty's believe it was all worth it and with the help of the General Public, Companies and the Trustees, they also believe they can help the other children and their families in the UK gain the same experience they found in America and help them reach their full potential in the long term.

John and Sue believe that by reaching out to other individuals and families affected by Primordial Dwarfism here in the UK and around the world will enable everyone to understand that the condition whilst it can and does have a detrimental effect on an individual, it's not all negative.

WWGF Family Support