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

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Critical Times 1

tylerWe cannot thank the "Walking with Giants Foundation" for what they did for our family during a very stressful, emotional and difficult time for us.

To explain the help we received, I would like to share a two episodes in our and Tyler's life, as this will help people understand what parents have to go through and what an organisation like the 'WWGF' does for parents and children affected by MOPDII.

Midway through 2007, during a routine MRI test, we were told that Tyler had six brain aneurysms. Then shortly after this heartbreaking news, we also found out

Tyler had developed a condition called Moya Moya, which is common in individuals with MOPDII. This condition causes the narrowing and possible closure of the blood vessels in the brain, ultimately leading to strokes.

It's not hard to imagine what we were feeling; all our nightmares and fears as MOPDII parents seemed to be coming true!

We waited in desperation for news on how things would develop and what treatment he would receive, then as

Tyler was going for corrective surgery for some other issues he was having at the time, he suffered two strokes within the span of 10 days. The strokes were caused by his blood pressure dropping and not enough blood passing through the narrow vessels in a section of his brain.

At the time we were fraught with worry, would our son survive, as these can be fatal for children with MOPDII, if he did survive what would be the long-term damage.

Furthermore, we were worrying about how we were going to pay our bills. We only have one wage coming into the home, as I am a carer for Tyler and his younger sister Keira. Tyler's dad (Marvin) had to take time off work without pay, we had to use our limited savings and credit card to cover our bills and pay for one of Marvin's parents in the UK to come over to Canada to support us; and to look after our young daughter whilst we stayed at Tyler's side.

We were very lucky with the first stroke, as this was in part of the brain that does not affect the body, but sadly the second stroke left Tyler paralysed down the whole of the right side of his body.

Tyler spent two weeks in hospital recovering under a very watchful eye of the Doctors, as they were scared he would have more strokes.

He eventually made a fantastic recovery from the second stroke; even though there are still tell tale signs of the damaged caused, but we feel very blessed that we got our son back as we were unsure if he would ever be the same little boy who made everyone smile, as he is such a joy and fun to be with!

The following months passed without too much worry.

Marvin was working flat out to try and recover our initial costs, but in February 2009, we were told that Tyler needed to have emergency double brain surgery to try and promote new blood flow in areas that are now deficient. This is not a cure but if the surgery is successful it will help to minimize the risk of further strokes in the future.

At the time, it was hard for us. Marvin would need to have more unpaid time off work, once again we needed to bring one of Marvin's parents' over from England to help us with our daughter Keira, who was just under a year old at the time.

Money worries were at the forefront of our mind, and the worry was hard to contain at time, especially as we need to be strong for Tyler.

So prior to Tyler's the brain surgery, we approached the "Walking with Giants Foundation" to see if they could help us. We could not afford to lose more money. We were desperate to have one of Marvin's parents fly over again to help us. All we wanted to do is be at Tyler's side as this was no simple procedure and came with fatal risks.

We could not believe it when the 'WWGF' came back to us and said they would help us. They covered Marvin's loss of earnings for both occasions; they helped us cover the costs of flying over Marvin's parents to help us!

Without this help, Keira would have had to sit in her buggy all day at the hospital with limited attention which would have been very unfair. We also did not want Keira to see Tyler after his brain surgery until he looked more like himself.

Having Marvin's parents come over on the two occasions allowed Keira to have that special one to one time and extra love from her grandparents that she deserved; it was also a huge support to Marvin and me to have family around in time of need.

We went into hospital with Tyler without the added stress of worrying about money, the lack of it and where it would come from. I would hate to think what we would have done without the support of the WWGF and the people who support it.

We were able to be at our son's side when he needed us most! – this meant so much to us and we cannot thank the WWGF and it's supporters enough!

Marvin, Nicola, Tyler & Keira White - Canada - April 2009

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