“It's beauty that captures your attention; personality which captures your heart.”

Anon

3/12/07 : 10.00pm

Well it's definitely been a while since I've been able to update the site. The last 8 weeks or so have been difficult for us to do anything at home never mind the on the web site. We have all been sick in one way or the other. It started in the 1st week in October with Alex suffering with flu, that took him 3 weeks to get over, I had severe laryngitis, Sue was full of flu and Mike and Jess were ill too by the 1st week in November. The 2nd week in November saw us all get back on our feet until Jess had a nasty fall that needed 9 stitches and is still hobbling about after having the wound re-stitched last week and and two days later Alex got a chest infection that resulted in him going to hospital as a precaution. He's out know causing mayhem around the house.

The last 3 months has saw Alex come on in leaps and bound. He's fully walking now, even by himself, but the little terror demands one of us hold his hands to take him for a walk around the house (i.e. upstairs and downstairs) and his energy levels are amazing; he's on the go 24/7. He's even trying to run but the problem he's having is he does not know what his hands are for and when he falls (which is a daily occurrence), he comes down face first, which leads to a bloody lip or a bloody nose, in fact he's going to have a nose like a boxer before his 3rd birthday. It may be a blessing in disguise as it may scare off the bigger kids when he starts pre-nursery in January :o)

He's still not talking, so to speak but he's making a lot more noise vocally, he fully understands what your saying to him and he will have a full conversation with you when he's interested. Still no luck on the eating side but he's putting a lot more food to his lips in a playful manner; and he loves biting on a fudge! He also like's taking sips from cups of tea, not a lot and not daily but it's progress!

Alex has also grew half a centimeter since his last check up, this is the first noticeable height gain he's had in six months, so his height now is 2ft 4¼ inches. It may not be a lot, but for him every millimeter counts. He looks taller, but this is down to his posture, it's getting better due to him walking and also the fact that he's technically wearing two pair of shoes, which adds near 2 inches to him.

There's no increase in weight, he's lost an ounce, this is not surprising taking into account the energy he has; so his official weight is 13lb 6oz's. We don't expect any major weight gains as he's only on 500mls of milk (17½ fluid ounces) a day. But we do worry what the weight loses will be in the next 6 months when he's running about the house like a mad man. As I said earlier his energy levels are amazing, it's non stop with him, He may have an half hour's sleep during the day (if Sue is lucky) and then he's back at it, walking until he eventually falls asleep between 7pm and 9pm. He awake's by 7am most days. We do worry about the weight loses because there nothing of him at the best of time and it's not that we can give him more food because his stomach will not take any more due to his size. We just want him to stay the same as what fat he has help to protect his bones especially when he's falling!

Anyway I'm going to leave it at this at the moment, Alex is asleep next to me in his bed snoring (what man takes a laptop to bed - I hear you say) and Sue is asleep next to me also snoring; and I need to get some sleep because of work. Sleep is a luxury for us has Alex does not have settled sleeps most nights. He has night terrors and sometimes he wakes because he can't turn him self over.

So for now, Good Night and I will get this site updated before Christmas. I will be updating the site every night now for thwe next couple of weeks, got load of pictures, some videos and a load of thank you's to put on. Additionally, I'll let you all know where we are with the charity/family support group that Sue and I are trying to set up - It's going to be called "The Walking With Giants Foundation" we're nearly there just need a couple more trustees and then hopefully the sky's the limit for the children with Primordial Dwarfism.

John (Alex's Dad)

4/12/07 : 11.00pm

Hello all, here's another updated, look like I'm starting to get into the swing of this, this was what I intended to do when I first created site way back in March this year. I didn't realise how hard ot would be but I'm going to try and update the site 2-3 days a week from now on.

Anyway yesterday I finished off by mentioning the charity, like i said it's going to be called “The Walking With Giants Foundation” hopefully in a nutshell it will allow all individuals affected by Primordial Dwarfism the chance to reach their full potential in life and help make their wishes/dreams come true.

It will provide help/assistance to individuals diagnosed with the following sub categories of Primordial Dwarfism:

Majewski Osteodysplastic Primordial Dwarfism (MOPD) Type I
Majewski Osteodysplastic Primordial Dwarfism (MOPD) Type II
Majewski Osteodysplastic Primordial Dwarfism (MOPD) Type III
Russell Silver Syndrome
Seckel Syndrome
Meier-Gorlin Syndrome
The idea about the charity was based on a wonderful parent’s idea of setting up a charity/family network in the US. Her name is Elizabeth Hale, she found herself in the same shoes as us when her daughter Chloe was diagnosed with primordial warfsim. She had no information, thought she was alone, until like us started researching and contacting other parents in the US. The she found out some of these parents attended an annual conference/holiday for individuals/families affected by all forms of dwarfism and it was the only time individuals with primordial dwarfism and their families got to meet and share experiences. At the same time as Elizabeth found this small network of families, more parents started to come get in touch with the small network of families and a comment was made about them all meeting up at the conference. All the families agreed it would be lovely but because of the costs involved this could not happen. Elizabeth would not accept this, we explained how the people of Merseyside and the UK, helped us to go to America and how also we did fundraising events and she had already made her mind up and decided to set up a charity. In the short space of 5 months she has raised enough money to help provide funds for 20 American families to attend the convention. She also laid on two events over consecutive days where just the Primordial children and their families got together. The result was magical these children and families (us included) did not have a care in the world, these children realised they were one of the same, their condition was forgotten about it, all the parents problems for a short while was removed; it was agreed that this would become an annual event. The American Charity is called the Potentials Foundation (www.potentialsfoundation.org).

Now that we know there are other children and parents here in the UK, we want to create that magical moment by bring the families together here in the UK along with meeting the American yearly too. This is a must and is so beneficial for the everyone affected by Primordial Dwarfism.

It will allow these individuals to meet under the same roof several times a year, this is so so important and like I just said, the benefits are so rewarding as we witnessed in America. These children as they get older will start to feel the exclusion their limitations in height brings them, from losing friends, to being secluded because of who and what they are, to living in an environment/world that’s not made for them; and the associated problems that a disability brings with acceptance in society in general and the workplace. The Charity will try to alleviate this by allowing them to meet regularly throughout the year, this will allow them to understand and show them they are not alone, they will be able to share experiences and they will be able to help each other in the future via a support network.

The majority of Individuals affected by Primordial Dwarfism, especially the ones with MOPD, will grow up (so to speak) as normal able bodied individuals but they will be trapped in either a young infant’s body or in the extreme cases a baby’s body. This may, can and will affect them mentally and physically but should this stop them achieving their full potential in life. The Charity will strive to eliminate any hurdles in life that these individuals may encounter and assist them to reach their potential by working with the National, Regional and Local Health Trusts, Local Education Authorities and in the future work with employers to ensure they get the right provisions now and in the future.

Additionally, it will hopefully alleviate some of the financial burdens that individuals and more so their families (parents) encounter due to Primordial Dwarfism or more so dealing with a disability. We do have State benefits, provisions and services that help eliminate financial hardships whilst coping with a disability but this does not always provide the necessary funds to help a family to meet the financial obligations and also cope with the additional costs that a disability brings. It cost us in the region of £20,000.00 in the last 6 months to help us cope with and understand Alex’s condition due to its rarity and Alex’s other underlying problems. We could not have done this without the help of the people of Merseyside and beyond, but it was needed and this has not taken into account what will be needed in the future, but for the next couple of years Alex future in secure, again it's all the people down to the people who have helped us and still are. Other families may not get the support from their communities and afar like we have, so this is where the Charity will help.

We’re nearly there but we need at least 2/3 more people to be trustees. Over the last couple of months we have been approached by a dozen people who wanted to assist us but because of the responsibilities of the trustee’s role and the legal obligations they have either declined with good reasons. So if there is anyone in the Merseyside that may be interested in becoming a trustee, please email us and we'll get back to you.

Anyway - once we have the trustees are in place, our first task we will be to raise £5,000 so that we can apply to become a registered charity via the Charity Commission. This will give us the credentials to approach businesses and other organisations to help us realise the charities aims. At the same time we will be contacting appropriate individuals to see if they would be patrons of the Charity.

Furthermore we are going to try to arrange the first Walking With Giants Convention here in Liverpool next year (August), I think it would be appropriate with Liverpool being the Captial Of Culture and will give us the platform to approach the many businesses who will be vying for trade in the region, additionally we are going to try and invite some of the children and the families from America and across the world to the convention along with some of the Doctors from America. It would prove beneficial for some of our own doctors here in the UK to attend also.

Other things that are planned is a fundraising cycle ride from John O’Groats to Land End by about 12 individuals. This is being done by an charitable trust called the "The Pilgrim Club" which is based in the North East, John Cutter the founder, got in touch with us after reading a story about Rayth (young lad in Durham). He wants to help him personally but wants to help the charity in conjunction with his own Charity. Additionally the cycle ride will take place at the same time as the convention and it is planned that they will ride into Liverpool stay over the night, meet the children and the families.

We will be arranging a couple of fundraising nights, at this present moment we have a wonderful family (Colin and Shirley Layfield whole live in Rock Ferry, Merseyside) who have been writing off to Businesses, Famous individuals (TV and Music), Football Clubs across the UK and the world asking if they would like to donate an item that can be used as a raffle or auction prize. It’s going well and we have received some wonderful prizes, I wil list them tomorrow night for you!

The main aims of the charity are:

Facilitate Opportunities to Meet

Including but not limited to the following:

Assistance with annual membership costs for joining the Restricted Growth Association

Assistance with travel and accommodation expenses to the annual Restricted Growth Convention

Assistance with annual membership costs for joining the Little People of America Organisation

Assistance with travel and accommodation expenses to annual Little People of America Conference

Assistance with travel and accommodation expenses to a quarterly Primordial Dwarfism Family Support Weekend

Provide family retreats exclusive to individuals affected by Primordial Dwarfism

Provide for Adaptive and Medical needs

Including but not limited to the following:

Assistance for family medical and dental expense beyond the coverage of NHS provisions and services

Assistance with expenses for adaptive equipment needed for the home, vehicle, or school outside of NHS provisions, services and State benefits

Assistance with travel, accommodation and medical expenses for medical care outside of the UK

Facilitate Education and Awareness

Including but not limited to the following:

Provide support and education to families of individuals with Primordial Dwarfism

Provide education literature to schools, the general public and mankind

Provide education to Hospitals and Medical Institutes

Research and Physician Support

Research

The Charity will strive to facilitate research by teaming with the following centres of care:

Nemours Clinic at A.I. DuPont Hospital for Children (Wilmington, DE)

Skeletal Dysplasia unit of Cedars-Sinai Hospital (Los Angeles, CA)

Or

Ideally somewhere in the UK

Physician Support

The Charity will strive to facilitate a Medical Advisory Board to:

Review any individual deemed to be affected by Primordial Dwarfism

Liaise with the relevant Local National Health Trust so that an Individual diagnosed with Primordial Dwarfism obtains the right support and treatment.

As I said Individuals affected by Primordial Dwarfism can and do lead full lives with the right support and the Charity will hopfully help them on their way.

There are 5 known children affected with MOPD Type II in the UK and we are aware that their over 12 cases of Russell Silver Syndrome. Theh RSS figure is based on families that we know off but the figures are greater - if you know anyone whose has any the Primordial Conditions here in the UK please ask them to get in touch with us, the more people we find the merrier

Once the Charity is live, a web site (walkingwithgiantsfoundation.org) will be created to publicise the aims and objectives, and provisions that we hope to provide.

Additionally it will provide an initial point of contact for families/individuals to get in touch with us and each other.

We will liaise with an organisation called “Contact A Family - www.cafamily.org.uk to promote the Charity and Support Group. They will also offer us practicable advice/training for the support group.

There will be additional support and training from either Liverpool Charity Voluntary Services or Sefton Voluntary Services as and when we/they deem it necessary. At this point I would like to thank Richard Davies who is one of the Developments officers at Liverpool Charity Voluntary Services. Richard created the Governing Document which is needed to set up a Charity. He has helped us realise our own dreams and like I said we're nearly there.

Well I'l leave it at that for the moment and will be back either tomorrow or friday with more updates.

John (Alex's Dad)