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Continued Hope for Casen

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Casen is SEVEN!

On February 21, 2012 our lives were forever changed as our beautiful and brave son Casen joined the world. He was born with a genetic condition that went undiagnosed until he was 4 months old; as no one knew or had seen anything quite like what Casen's chest looked like.  "Wow, that is interesting and I have never seen anything like that" became the normal words we would hear at doctors appointments both here in Washington State and across the USA as we sought to find answers. 

Our community rallied to help us pay for genetic testing and a diagnosis was confirmed: Glomovenous Malformation Plaque Type. Only a handful of diagnosis in the world.  At the time it was believed by our geneticist to be 12, however we now believe that number is higher (30s, possibly?). Basically, Casen's body is missing the gene that regulates blood vessel growth.  His body continues to grow blood vessels. If left untreated these vessels harden and become extremely painful and clot causing potential harm to his internal organs.

Casen's condition presented itself as a double hit deletion and at the time the only doctors we could find to help us gain knowledge were in Brussels, Belgium.  Yes, Belgium.  I am going to fast forward a bit---else this could be a book!  

Our family has been to Belgium 2 times for extensive stays and traveled to multiple hospitals in the US.  When Casen was 1 1/2 and after countless doctors appointments, news stories, and consultations around the USA we got the break we had been praying for.  A doctor in San Antonio, Texas surfaced and was willing to try laser treatment to stop the blood flow and "kill" the vessels.  The thing about the treatments is that they will likely have to be a lifelong thing for our sweet Casen in order to keep the vessels at bay.  The treatments will be in cycles (8-12 at a time), because his body continues to grow vessels.  Trauma to any area on his body causes increased vessel growth (example:  he falls on concrete and his knee a few weeks later where it was scraped now has vessels).  It is extremely scary but we try and let him live a "normal" little boy life, without keeping him in a bubble.  If you know Casen you know that this is true and that it would be IMPOSSIBLE to keep him "tame". Casen has seen his doctor in San Antonio for 3 treatment sets (19 laser treatments) and we are just begining our fourth treatment set.  He has had one major vessel resection surgery on his boy parts in Spring of 2017 and boy was that traumatic—unfortunately, those vessels are coming back in with vengeance.    

Our Puyallup community and beyond supported us in astonishing ways when Casen was first born and helped our family when we needed it the most.  We were desperate to provide his care and find answers to what was causing our son to have purple and blue vessels covering his chest. Without the support of our army he would not have the quality of life that he does now.  

The vessels have continued to grow and spread (they are over his entire body with the exception of his right leg and foot), and we need your help yet again.  The fourth treatment set is set to begin in May and his medical fund is not going to sustain his continued care (supplement my income as well while I be with him for treatment and recovery). 

We had a successful but very invasive treatmentsst June and again in august 2018❤️
We again find ourselves nervous for the treatments to come and continually rely on hope.

We appreciate you praying over us, sharing our story, and perhaps donating to Casen's medical fund IF you are able.  Every dollar is appreciated. 

Thank you for your continued support of our family.  We are blessed by each of you. 

Love to all,
The Buswells
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  • Anonyme
    • $20 
    • 5 yrs
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Organisateur

Jenna Buswell
Organisateur
Puyallup, WA

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