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My name is Samuel Pumphrey Jr, and my fiancée's name is Nykisha Brooks and we are the proud parents of Saniyah Lanae Pumphrey. Saniyah was born on May 31, 2011 and now at the age of 3 is young lady full of energy, laughter, and has a love for dancing. She will dance until her legs get tired or until she gets tired and falls asleep. From the first time she could speak, she began saying the word “Holla”. From that point on we knew she was going let her voice be heard everywhere she went. Around the family Saniyah is the life of the room. She will keep you smiling and laughing with what she does, but mostly with the charisma with which she speaks. She has an old soul during daily conversation, sometimes recalling things you said or did that you may have forgotten.
In 2012, at the age of 1, her mother and I noticed a slight change in the curvature of her back. We visited various doctors searching for answer about the situation. After being referred to see a genetic doctor at John Hopkins University Medical Center, she was finally diagnosed with Mucopolysaccharidosis type IV-A, better known as MPS IV- Morquio Syndrome. Upon learning about the diagnosis, as parents we were shocked. Neither of us had ever heard of the disease, nor did we have any idea of how to treat it. After days of research and help from other resources, we were able to find out about the National MPS Society and attended their annual conference in October 2013. That experience was the best thing we ever did. We were referred to a genetic and an orthopedic doctor that in our region. The genetic doctor, Dr. Tanpaiboon was located at Children’s National Hospital in Washington, D.C. and the orthopedic doctor Dr. Mackenzie was located in Wilmington, DE. On our first visit with Dr. Mackenzie he was able to inform us that Saniyah condition required immediate neck surgery to fuse her 1st and 2nd disk in her neck, a common surgery for most Morquio patients.
On March 3, 2014 Saniyah went through her first cervical spine infusion and it was a success. She has recovered quickly and is back to her normal self. As you can guess, the bills are coming in and co-pays have really put us in a situation in which we are in need of assistance. Saniyah receives a weekly infusion treatment for the enzyme her body cannot produce at Children’s National Hospital and this 6 hour treatment requires both parents to miss a full day of work. On top of that, she is scheduled for her next round of surgery in March, 2015. Dr. Mackenzie has informed us that Saniyah’s hips will need to be reconstructed and she will need to have her knees stabilized also. With this in the near future, we are trying to prepare ourselves for this next round of surgeries which will require a two week surgery period in Wilmington, DE and 6 months, 4 days a week physical therapy in Washington, D.C. in order for her to fully recover.
Eventually, we would like to put on a talent show and some other possible events to help raise money for Saniyah’s foundation (Uniquely U) and for the National MPS Society. Our goal is to make sure that awareness about the disease is available to newly diagnosis patients and for people who are interested in learning about the effects of this disease.
Thank you for any donations that are placed and we will keep you updated with all progress Saniyah is making.
In 2012, at the age of 1, her mother and I noticed a slight change in the curvature of her back. We visited various doctors searching for answer about the situation. After being referred to see a genetic doctor at John Hopkins University Medical Center, she was finally diagnosed with Mucopolysaccharidosis type IV-A, better known as MPS IV- Morquio Syndrome. Upon learning about the diagnosis, as parents we were shocked. Neither of us had ever heard of the disease, nor did we have any idea of how to treat it. After days of research and help from other resources, we were able to find out about the National MPS Society and attended their annual conference in October 2013. That experience was the best thing we ever did. We were referred to a genetic and an orthopedic doctor that in our region. The genetic doctor, Dr. Tanpaiboon was located at Children’s National Hospital in Washington, D.C. and the orthopedic doctor Dr. Mackenzie was located in Wilmington, DE. On our first visit with Dr. Mackenzie he was able to inform us that Saniyah condition required immediate neck surgery to fuse her 1st and 2nd disk in her neck, a common surgery for most Morquio patients.
On March 3, 2014 Saniyah went through her first cervical spine infusion and it was a success. She has recovered quickly and is back to her normal self. As you can guess, the bills are coming in and co-pays have really put us in a situation in which we are in need of assistance. Saniyah receives a weekly infusion treatment for the enzyme her body cannot produce at Children’s National Hospital and this 6 hour treatment requires both parents to miss a full day of work. On top of that, she is scheduled for her next round of surgery in March, 2015. Dr. Mackenzie has informed us that Saniyah’s hips will need to be reconstructed and she will need to have her knees stabilized also. With this in the near future, we are trying to prepare ourselves for this next round of surgeries which will require a two week surgery period in Wilmington, DE and 6 months, 4 days a week physical therapy in Washington, D.C. in order for her to fully recover.
Eventually, we would like to put on a talent show and some other possible events to help raise money for Saniyah’s foundation (Uniquely U) and for the National MPS Society. Our goal is to make sure that awareness about the disease is available to newly diagnosis patients and for people who are interested in learning about the effects of this disease.
Thank you for any donations that are placed and we will keep you updated with all progress Saniyah is making.