Dylan Battling Shwachman Diamond Sy

It takes a village to raise a child, what does it take to raise a sick child? Dylan is a 2 year old little boy who has been in and out of the hospital since he was 8 weeks old with over 17 admissions, in his little life. This is more than a normal person will experience throughout their lifetime.  

Since an early age, Dylan has been diagnosed with multiple diseases such as neutropenia, pancreatic insufficiency, asthma and proctitis.

At 15 months olds Dylan had his NG tube placed and continuous feeds were initiated. 3 days later he went under surgery to have a permanent PGE tube placed on his abdomen to get his feeds, but on that evening after surgery Dylan developed tachycardia and was put on a monitor in the ICPU for 6 days.

Shortly after the G-tube was placed, we had Dylan back to eating some food orally!  We were tube feeding him for 12 hours a day plus letting him eat anything he wanted by mouth. He was finally starting to look healthier--small, but healthy.  Nonetheless, throughout following weeks Dylan's weight was still a roller coaster.  It was very frustrating because nobody knew what was wrong.  We had doctors communicating across the state and they were all stumped! 

On December 2015, a bone marrow aspiration was performed and we were given the results that no parent would ever want to hear. Dylan's results were abnormal, his bone marrow proved to be dysfunctional and hypo-cellular, with a low percentage of productivity. Dylan was diagnosed with Shwachman-Diamond Syndrome. SDS is a disease filled with mystery and is often fatal. It is a bone marrow failure syndrome which can predispose to myelodysplasia and /or leukemia, It affects multiple areas of the body including the pancreas, bone marrow, skeletal system and can affect other areas as well. We were also told that if Dylan's bone marrow were to become dysplastic and/or evedidence of leukemia , he would required a bone marrow transplant.

On his last admission to the hospital the medical team decided to start aggresive treatment on his bone marrow with every other day shots of GCSF (Neupogen) to stimulate his bone marrow to produce more Neutrophils., and Dylan also goes through weekly hospital appointments with blood draws, to ensure his counts are not too low, and will be getting a bone marrow biopsy every six months for now.

With all the new findings and diagnosis on Dylan ....The road is leading us to Boston to Dana Farber Cancer Center and to the helping hands of Dr. Akiko Shimamura, MD, PHD, Director, Bone Marrow Failure Programs, at Dana Farber/Boston Children's Cancer and Blood Disorders Center. Dylan's medical team in Orlando strongly believes that Dr. Shimamura and her team in Boston Children's will provide the most advance care for Dylan's current condition.

There is NO CURE for this disorder/syndrome and this is a lifelong battle for my baby.... He is a happy and an optimistic, wonderful little boy who fights with all he has to live a good life. Please help us pay for his medical expenses, trips to out of town/State hospitals and by sharing his story on Twitter and Facebook.

WITH GOD, PRAYERS, LOVE, AND YOUR KIND HELP WE CAN HELP DYLAN FIGHT SDS......



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Nuestro adorado Dylan se encuentra en una continua batalla contra su Diagnóstico de Shwachman-Diamond Syndrome., Es una enfermedad muy rara de diversos trastornos que afectan a varios órganos. En la sangre existe una disminución de leucocitos polimorfonucleares(neutropenia), bajo número de hematies (anemia) y disminución de la cantidad de plaquetas(plaquetopenia), en el páncreas se produce acumulación de grasa que conduce a insuficiencia pancreática, tambien se desarrolla una deficiencia en la función de la médula ósea que se conoce como aplasia medular. Por otra parte, las personas afectadas tienen una probabilidad alta de presentar leucemia a lo largo de su vida.

Durante sus dos cortos años de vida ha ingresado al hospital más de 17 veces y a desarrollado otras enfermedades como insuficiencia pancreática debido a su síndrome, y su medula osea esta disfunctional con poca produccion de celullas.

En una de sus últimas visitas al hospital, el equipo médico nos referio a un especialista en su síndrome ubicado en la ciudad de Boston. Y aunque su síndrome no tiene cura, tenemos las esperanzas puestas en encontrar un tratamiento que le permita tener calidad de vida y disfrutar de su infancia como cualquier otro niño de su edad.

Agradecemos sus donaciones y que compartan esta página con sus amigos y familiares para así entre todos ayudar a Dylan. Confió que con la ayuda de Dios, sus oraciones, y su amor hacia mi hijo, lograremos la meta!

GRACIAS!!!