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- Life, beauty, stories, friends, fun - who doesn't love that?. I'm Martha, and I'd like you to tag along with me as I explore all of these topics, and more.
- Funded by the Brian and Caris Chan Family Foundation and the Liferay Foundation, Fight NPC is an initiative dedicated to empowering families in their struggle against Niemann-Pick Type C. We know it's easy to despair in the face of such an aggressive, deadly disease, but recent medical breakthroughs have given NPC-affected families across the world hope for a better life for their children. Living with NPC is difficult, but we now believe that living with NPC is possible. Don't give up - join us as we fight NPC.
- Talking about where I am from, and some of the misconceptions people have about where I am from. ENJOY the show! MWELABA
- Hello everyone. Am sharing with you all my experience in America first hand. What I thought before and after. Enjoy! Stay tuned for more episodes! MWELABA
- "I got a ticket. I got a ticket. I got a ticket. Hey, hey, hey..." Oh, wait. That's not good.
- This week I'm sharing with you some of my favorite beauty products that I have been using over the summer! Enjoy!! MWELABA
- "The obvious things were they had an enlarged spleen and a mildly enlarged liver...verbal things and some of the other more dramatic stuff came along quite a bit later."
- "Right now Cassi gets the injection in her back and Addi gets her injection right into a little port that's just right below her scalp. We do that because the outcome of the Niemann-Pick disease is well understood..."
- "It might be really hard as a parent to take that step if your child is fully functional...if you know the child has NPC, the earlier the intervention you can do, the better."
- Since starting cyclodextrin, the Hempels have seen not only seen a halt to the progression of symptoms, but have even seen improvements.
- "We started implementing cannabis oil into their program and we've seen a pretty big reduction in their seizures..."
- "It's extremely difficult to keep life 'normal' for the family. Any family with a rare disease knows this."
- For many years, Bryan and Laura didn't know their kids had NPC, and doctors didn't test for it. One telltale symptom - an enlarged spleen - could have told them otherwise.
- A lot changed for Peyton when his symptoms manifested at eight years old. In many ways, however, he's the same kid.
- "We had to drive six hours south to Oakland every two weeks...but we felt so strongly that the cyclodextrin was working and helping that this is something we really needed to do for our kids."
- Since the damage NPC does to neural pathways is irreversible, the Hadleys pursued early intervention with their children.
- After Peyton began cyclodextrin treatment, both his speech and gait improved noticeably.
- "We spent about a thousand hours in the hospital until we finally said, 'Why can't we do this at home?'"
- "Ultimately, the decision to start cyclodextrin started because we just couldn't wait any longer."
- "Peyton is prone to seizures...[cannabis oil] controls the intensity of the seizures and the regularity of them."
- Dr. Hastings has over 15 years' experience treating cancer in children, and works in the Neuro-Oncology Program at Children's Hospital & Research Center Oakland.
- 2015–TV EpisodeAfter treatment, Peyton told his family and doctor that he could think more clearly and focus better.
- 2015–TV EpisodeWith cyclodextrin, the girls have a higher quality of life, and are alive.
- This was the first treatment method for Addi and Cassi - a continuous infusion of cyclodextrin over 4 days.
- In October 2012, Addi and Cassi began to receive cyclodextrin directly into the spinal fluid.
- Addi gets cyclodextrin by a third method: intracerebral (ICV) treatment via a port in her scalp.
- Knowing that early-onset NPC meant that Addi and Cassi were only expected to live to the age of 10, Hugh and Chris made it their mission to find a way to help their daughters.
- For families battling NPC, choosing cyclodextrin comes with risks. The benefits, however, are potentially huge.
- Giving Kayla cyclodextrin early stabilized her NPC and kept her asymptomatic years after her diagnosis.
- In both Peyton and Kayla, cyclodextrin treatment brought the disease's progress to a standstill.
- "Now we have a new normal...We have to be caregivers, we have to be strong, and it's not easy."
- "Mollie mentioned how, when her brother Jay would laugh, he would sometimes, like, collapse a little bit. It turns out it was cataplexy."
- "The only bad thing we heard was loss of hearing. And we decided we would rather have a deaf child than no child at all."
- Time is crucial when it comes to treating NPC - even the three to four months it took for JP to get cyclodextrin could have prevented irreversible damage.
- "A year ago, he wasn't talking, it was like one-word answers. He talks now, again."
- "I would absolutely 100 percent recommend it, and it's the reason I'm driving to Washington to talk to them."
- Dr. Nepo is associate professor of clinical pediatrics at Albany Medical College, and works at the Melodies Center for treatment of children's cancer and blood diseases at Albany Medical Center.
- JP had abnormal eye movement and trouble with cataplexy - a condition that causes the patient to suddenly lose muscle tone.
- JP's cataplexy has improved, and his symptoms show no signs of progression.
- Receiving intrathecal cyclodextrin can be anxiety-inducing for your child. Calm, supportive parents and nurses are the most important factor in easing the process.
- Dr. Nepo's background in oncology and hematology made her an ideal candidate for performing JP's intrathecal injections.
- Cyclodextrin should be administered under the careful eye of a neurologist, and you should be certain your child has Niemann-Pick Type C and not a disorder with similar symptoms.
- Many drugs Dr. Nepo uses in her job as a pediatric oncologist are not formally approved for children, so the use of a promising drug like cyclodextrin is not unusual.
- Dr. Pugh is an assistant professor of pediatrics and neurology at Albany Medical College.
- NPC hampered JP's ability to walk, speak and swallow.
- Treating Niemann-Pick Type C early is especially important due to its chronic, degenerative nature.
- JP takes monthly fine motor skills tests. Though he hasn't shown much improvement on these assessments since starting cyclodextrin, he has shown no signs of deterioration.
- Intrathecal treatment has advantages compared to intravenous treatment because it gets the cyclodextrin closer to its target, which increases the drug's effectiveness and lessens the chance of side effects.
- Dr. Shur tapped Dr. Pugh, a neurologist, for a team of doctors focused on pursuing a cyclodextrin treatment for JP.
- Cyclodextrin, though still in a trial phase, is worth having a conversation about with your doctor.