Romans 5:3-5

"We can rejoice, too, when we run into problems or trials, for we know they help us develop endurance. And endurance develops strength of character and character strengthens our confident hope of salvation. And this hope will not lead to disapointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love." Romans 5:3-5

Tuesday, 28 February 2012

February 29th 2012 Happy Rare Disease Day!

"Hypoparathyroidism is a rare disorder in which the body produces insufficient levels of parathyroid hormone, the principal regulator of calcium and phosphorus. When the body has too little parathyroid hormone, blood calcium levels drop and phosphorus levels increase, which can cause muscular and neurological symptoms, as well as bone impairments. There is no approved hormone replacement for hypoparathyroidism. It is one of the few remaining hormone deficiency syndromes in which replacement therapy using the native hormone is not clinically available. Hypoparathyroidism is currently managed with large doses of calcium supplementation and active vitamin D therapy to raise the calcium levels in the blood and reduce the severity of symptoms. Over time, calcium may build up in the body and result in serious health risks, including calcifications in the kidneys, heart or brain".

Tomorrow Zach and I will be doing the radiothon for The Stollery Children's Hospital.  We will be on
Cisn Country at 9:15am

CHED at 10:05am

Thank you to everyone for your love, support and prayers.

Friday, 24 February 2012

Thank you....such kindness..

Rotary Club of
Edmonton Strathcona
"The Friendly Club"

On January 31st, 2012 we were treated to a wonderful lunch with some very amazing people with the Rotary Club of Edmonton Strathcona. 
Through friends of friends, this group of dedicated "servers" heard about Zach and his need to travel to the US to get the medical attention that his rare disease requires.  The membership presented Zach with a cheque for $3,000.00 to "help with the expenses related to the
 future medical care".

This continuous outpouring of generosity is so overwhelming.  Perry and I are humbled and so thankful. We want to Thank the Rotary Club of Edmonton Strathcona for caring and for blessing Zach and our family with this gift.  On the letter we received, on the bottom it states,
"Service Above Self"
This truly is a quality that we are to pursue.
Thank you so much,
May God Bless You.

Monday, 13 February 2012


A few months back Zach was granted a wish through the MAKE A WISH foundation. 
Zach's wish is to swim with Dolphin's.
Today we were given the date that our family gets to go on this adventure.
They are sending our family to Florida!

We can hardly believe it!  This is a great blessing and is happening at such a great time.
We will keep you posted on the details as they share it with us.

We are so thankful for the emails, phone calls and notes we've received this week.  Your encouragements and prayers are graciously received.
God Bless

Friday, 10 February 2012

Lab Results...

We have received the results from Zach's genetic testing.  It is not what we expected and we are still sorting it all out in our heads.  Zach was having two genetic tests done.  The CASR gene and the AIRE gene.  We were hoping for one or the other.  We just want an answer to this 9 year question as to what gives Zach so many health issues. We did not get that answer. 
What they can tell us is that Zach is "heterozygous for a C>T nucleoitde substitution in exon 7 of the CASR gene". (really helpful  LOL).  Zach has what is called a "Missense Change" (A784V) and this variant has not been reported on.  In other words, Zach has a NEW change in a gene that has never been seen or reported the known world.
So now what?  Well, first they need to do a clinical evaluation on Perry and I.  So we will be sending our blood to this same lab for them to test.  This needs to be done to assess the biological significance of this "missence Change". 
As we get more information we will post it on the blog.

It is hard to say how we feel.  We seem to always be hanging on "the next test" or "the next appointment".  I tend to get my hopes up and think, ok they will figure it out... and then they don't.  I used to wish that Zach at least had something "common" so I could find another mom  with a child with the same disorder.  Someone who would know exactly what its like to have a child like Zach.  I know that God gave us Zach so that I would learn this lesson.  That there is only one who knows everything. Only one who fully understands. Only one where I can safely place my hope, my faith and trust.....Jesus.  He alone knows what Zach has and what he needs.  He is Sovereign over everything.  I am reminded of this again and again. 

Psalm 139:14
"I will give thanks to You,
for I am fearfully and wonderfully made;
Wonderful are Your works, And my soul knows it very well".

Wednesday, 1 February 2012

Countdown to Rare Disease Day

This February is special, it has 29 days.  I believe this only happens once every 4 years...Its rare!  LOL!  So I think its kind of cool that In Canada and the US they Celebrate the 29th of February as
 " Rare Disease Day". 
At the NIH hospital that Zach goes to in Maryland, they have a big celebration. 
You see, one of the hardest things about a rare disease/disorder is that its rare.  Not alot of information available and often not great treatments either.  However when we see all these rare cases together in a group...we don't seem so rare anymore.
Zachary has Chronic Idiopathic Hypoparathyroidism.  The prevelance of this condition is one in a million. This is a symptom of a greater disease.  We are waiting for his lab results to come back from Maryland.  Hopefully, by the 29th of February, we will know what rare disease Zach has. 
Zach last year at the Stollery radiothon
We are continually encouraged by your prayers and concern for Zach. 
God Bless