Hi,

My name is John Connerty, I am the co-founder and secretary of the Walking With Giants Foundation. 

My wife and I along with 5 friends set the charity up to help individuals affected by one of the rarest forms of dwarfism in the world (Primordial Dwarfism).  The charity has been established just over a year now and we have come a long way since January 2008.

Our initial aims was to create events so that these individuals and their families could meet to remove the isolation and fear the condition brings, along with setting up a medical review board to help these individuals. 

We held our first convention in Liverpool last October where 14 families (9 from the UK , 2 from the US, 2 from Ireland and 1 from Canada ) met up, many for the first time.

It also allowed them to speak to and listen to doctors on our medical review board and specialists from Canada  and  Austrailia.

In addition to this it allowed families to participate in research that is being conducted here to unravel the mysterious of the condition.

Our aims this year is to duplicate a similar event (August 2009) but also allow the individuals and their families to meet up several times a year.

Additionally we are in the process of providing other means of assistance in forms of grants to help these individuals and their families.

Some examples of funding are:

• helping parents who don’t drive, we will help fund driving lessons – this is crucial because of the amount of hospital appointments and stays through illnesses an individual with Primordial Dwarfism has.
  
  
• Fund tailor made clothes – where do you find a school uniform for a 5 year old who wears clothes made for a 6 month or 18 month old child.

• Source out and fund specialised furniture and equipment.

• Fund individual respite breaks for families

• Help families to get to Amercia to meet the experts

• Fund items of necessity to allow the families a normal existence as possible

• Help any family in poverty caused by the loss of earnings due to the child having Primordial Dwarfism

• Help any parent who needs access to training for employment because they had to give up their job many years ago to look after their child.

Is this important?

To understand what an individual with MOPDII and Primordial Dwarfism has to endure we have been given permission to publish the following
article. 

It written by a psychologist in who helped an Australian family whose 5 year MOPDII child was having problems in school - was deemed as being disruptive amongst other issues. The psychologist talked to the child, listened to child and followed this child around for several months to establish what the problems were.  Then prepared the article as a report for the Educational Authorities and Social Services.  
When you read it, try to remember what life was like for you as a young child and remember, their lives in respect to lack of height is unchanging, they stay this size throughout their lives. You may understand what we are trying to do and achieve for these individuals.

THROUGH MY EYES

Try and remember what it was like to be 7 years old…. Now for a twist, imagine you are even smaller than the height you are when kneeling on your knees. Objects of interest are usually out of your grasp. Objects of necessity (door handles, light switches, wash basins) are out of reach. You make eye contact with the knees of adults, their faces are not easily viewed and you are forever looking up at them towering over you. Sometimes people don’t notice you. You get bustled out of the way stepped on or even sat on. As a parent of a child with dwarfism indicates “you are alone in a world of giants”.

Paradoxically, you go from not being noticed to being instantly recognised everywhere you go, whether it is in the school yard, walking down the street or entering the shops. People feel the need to touch you, ruffle your hair or call out to you like you are their long lost friend. This is baffling as you have never met them before and even if you have you don’t remember them. As Kiruna Stamell (short stature person) puts it “I've had this discussion. It's like, it's like being famous but without the perks.”¹

There is an element of mystique around how you do things. People assume you are younger than you actually are. You remember at pre-school being told to be the baby and getting pushed around in a toy pram. Kids still continue to talk to you like a baby with some “cootchy cootchy coos” and “Oh isn’t he cute”. Strangers are alarmed when mum waits for you outside while you go to the public toilets on your own. Adults pick you up and plonk you in places you don’t want to be because it is easier for them. People at times wrap you up in cotton wool, scared you might get hurt by others, emotionally or physically. Dwarf rapper Bushwick Bill has his own take on it: "People tried to protect me; I didn't give a * * * * about that....I wanted to be part of the great big world we live in.”²

You continue to grow on the inside but the outside doesn’t keep up. The older you get the more obvious the discrepancy is to others but things really haven’t changed - you are just you. As Margherita Coppolino (short stature person) indicates “The age of eight was really the time that I significantly remember children in the orphanage saying to me: ‘You'll never grow up, Marg,’ and I kept denying it.” ³

Even though you are 7 you continue to wear nappies. You don’t always feel hungry and you are made to drink smelly milk. Everything you do requires strength and effort. You have the attention span of an ant and you are always on the go. Regardless of how you might want to be, this is how you are. You enjoy being with people and love to socialise, you are the life of the party. As Katerine Sidin (short stature person) states “In Australian society, I feel I have to be twice as out going - twice the person - to be accepted along with everyone else and be taken seriously.”⁴

Consider all these things and then on top of it throw in an intellectual disability that puts you at the level of a 3-5 year old….. Imagine how you would respond to the world and how you would respond to the people in this world……

By Beth Matters, July 2008

 References

¹  “Show and Tell: Kiruna Stamell & Emma J Cooper” www.abc.net.au/tv/enoughrope/transcripts
²  “No bigger than a Minute” – film by Steven Delano
³ “How it feels…to be a person of short stature” www.theage.com.au
⁴ “It’s a small world” www.disability.qld.gov.au/news-events

As you can see from the above it speaks volumes and hopefully it gives you an insight of what children and individuals affected by MOPDII/Primordial Dwarfism has to endure throughout their life!

Everyday individuals with MOPDII face hurdles that require determination, strength and support. They overcome these hurdles with dignity, pride and character. They may live in a world and environment that is not built for them, nevertheless, it is they who are the giants. Each and every one of them, a titan amongst their peers and role models for the future, all awaiting to fulfil their true potential.

If you ever meet a primordial dwarf in person you’ll understand the paragraph above.

Now all I ask is - please help us to help these individuals and their families, the minimal donation is £2.00 and don’t forget to allow us to collect the gift aid from the Government - in a nutshell for every £10 raised we can claim £2.80 back from the Government.

The £5,000.00 target will help us with some of our aims - so please support us!

In August this year (2009) we are holding our 2nd annual convention here in Liverpool.

The convention allows individuals and families affected by Primordial Dwarfism to meet doctors, experts, more importantly it allows individuals with Primordial Dwarfism to meet other individuals like themselves. This allows them and their families to understand they are not alone and no different from anyone one else.

As mentioned at the earlier, we brought 14 families together, this year we're looking to bring more individuals and families together so that they can make new friends and meet up with friends they made last year

With the help of the general public via donation we are able to give the individuals/families four days of fun and adventure that they will not forget!

For many of them, it is the only time they get away as a family and enjoy themselves.

It allows them for 1 week in the year, to forget about all their problems concerns and fears.

Please consider helping them to enjoy that week !

One last thing - if this page comes to you via Facebook - send it to all you friends

John