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Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Tuesday, May 13, 2014

T+286 Wear Purple on May 15th for International MPS Day

This Thursday is International MPS Day.  Wear purple in support of Coleson and all other MPS families.  
Also, today was Coleson's last dressing change. Hooray!  Next Tuesday (5/20) he goes in for his line removal and port placement.  He will finally be able to take a real bath and go for a real swim!

Here is a short You Tube video narrated by Alec Baldwin on lysosmal disorders.

http://youtu.be/61DRmSFgSFA


Here is some info on MPS as provided by another MPS mother.Thanks Amber Mongan

Treatment for MPS I (Hurler syndrome): Successful HSCT (Hematopoietic Stem Cell Transplantation) has been performed for children with Hurler syndrome since 1980. The immediate benefits include correction of the enzyme deficiency and clearance of glycosaminoglycans (GAGs). Long-term benefits include the possibility of long-term survival by protecting the heart, lungs, and brain from the effects of progression of the MPS disorder. Other organs and tissues can also show benefits from the HSCT; these include the eyes and ears, liver, spleen, joints, airway, etc. However, it should be noted that many children are still requiring a variety of orthopedic surgeries despite a successful transplant. While the term “cure” should not be used, HSCT has the longest track record of any effective therapy for Hurler syndrome, including the ability to preserve cognitive function and development in the normal range. 

Brought to you by Be The Match: WWW.BeTheMatch.OrgA bone marrow or cord blood transplant is the only treatment that can stop the effects of Hurler syndrome at this time. A bone marrow or cord blood transplant begins with chemotherapy, with or without radiation, to destroy the diseased cells and marrow. The transplant replaces diseased blood-forming cells with healthy ones.
The type of transplant used for Hurler syndrome is an allogeneic transplant. This type of transplant uses healthy blood-forming cells from a family member, unrelated donor, or umbilical cord blood unit.
For an allogeneic transplant, a patient gets chemotherapy, with or without radiation, prior to transplant to prepare his or her body for the treatment. Then the replacement cells are infused into the patient’s blood stream. From there, the cells find their way into the bone marrow, where they start making healthy red blood cells, white blood cells and platelets. These new cells have the enzyme needed to break down GAG and stop further damage to the body.

It is because of the shortcomings of the current treatments (and the lack of treatments entirely) that organizations such as The National MPS Society, Hunter Syndrome Foundation, Team Sanfillipo, Hunter Syndrome Research Coalition, Ryan Dant Foundation, and numerous other parent based organizations exist. If it were not for the willingness of families to not only say “Something has to change” but also to stand up and do something about it, doctors like Emil Kakkis would have lost funding for research before they were able to bring a treatment to reality for us. These family organizations work not only at funding promising new research, but also at advocating inside of the FDA and congress to educate on MPS, and negotiate the best ways to bring safe and effective treatments through the system as quickly as possible so that families can gain access before it is too late to help their child.
This year International MPS Awareness Day falls on a Thursday (May 15th) so many families will be celebrating with fundraising events today. The success these events translates to saving the lives. It translates to hope. So make sure you ask the MPS Family you love how you can help give them hope today.
“What we needed was one day. Whatever money you could raise in one day, somewhere somebody could use it.” -Mark Dant  MPS I HS Dad