That’s my cousin Shannon and her family there to the left.  It breaks my heart to tell you their story and the struggles they are facing.  They found out this year that both of their children have Sanfilippo Syndrome or MPS III.  It is a devistating desease that I just can’t imagine having to live through and watch it devistate my children.

From their blog, Exploring Holand:

“Sanfilippo Syndrome is a recessive autosomal genetic disease.  Children with Sanfilippo Syndrome are missing an essential enzyme needed to breakdown and dispose of long sugar chains in the body called mucopolysaccharides. also known as GAGs.  Because these sugar chains cannot be broken down and disposed of they accumulate in the cells causing progressive damage.  Babies and young children with Sanfilippo Syndrome appear normal, but symptoms begin to appear with age as more and GAGs build up in the cells of the body.  There are 3 stages to the disease. Stage 1 the child begins to lag behind peers and begins to display difficult behaviors.  Stage 2 the child losing his/her language, becomes hyperactive, chews on everything, and has sleeping difficulties.  Stage 3 the child slows down, becomes dependant for all mobility and loses the ability to chew/swallow.  There is no treatment or cure for Sanfilippo.  Life expectancy varies.  Waverly and Oliver have the most agressive type of Sanfilippo.”

When we found out what they were facing, we just couldn’t believe it.  I think it’s the only time my wife and I openly whept for someone else’s hardship.  And I mean whept.  I couldn’t imagine watching my kids slowly deteriorate before my eyes.  Even writing this the tears flow.  They have such a long road ahead of them.  I live about as far away from them as you can get and still live in the US, so there isn’t much I can do to help them where they are, but, their friends and my sister started up www.AHundredForAHome.com.

What is A Hundred For A Home?  “A Hundred for a Home is a campaign aiming to gather 4,000 friends who will donate $100 each in order to help the McNeil family with the purchase of a house, necessary home modifications, and out-of-pocket medical expenses.

We want to minimize their financial burden, allowing them to enjoy the short time they have with Waverly and Oliver. (Of course donations less or greater than $100 are greatly appreciated!)

I’m sure you can imagine, well at least get an idea of what they are going through.  Now add on top of that the financial burden of equipping their house with needed changes, constant doctors and specialists and all the other expenses that come with this desease.  It’s overwhelming.  But we all can help.  I love my cousin and her famly dearly and would be incredibly honored, appreciative and in your debt if you were able to help them in thier journey.

Thank you and God bless – Jamie

To donate – http://ahundredforahome.com/