Stephanie and Christopher’s Story: Rare Disease and Medical Nutrition

Any parent would agree that having a child changes your world forever. Yet, having a child with a rare disease throws you not only into the role of parent but also advocate, educator, researcher, and medical provider. Those with rare diseases, and the guardians’ that care for them, have different perspectives on the world. We must, or we and those we care for will not survive.

My son Christopher was diagnosed in 2008 via new-born screening with a rare inherited metabolic condition called LCHADD. Ultimately, his body cannot break down long chain fats and use it for energy. Looking at Christopher you would never know that he has a rare disease. He is thriving academically, loves to write, play chess, make music, and compete in baseball. He enjoys magic and loves making his parents and friends laugh. In fact, his laughter is contagious.  Christopher is not thriving because his condition is “easy” to navigate. He is doing so well because he is diligent with what little things we understand about his rare disease. He takes a special medical formula daily that gives him the right kinds of fats that his body can process. He eats every two-three hours throughout the day with MCT oil drizzled on his food, so his body will not use his muscles for energy. He also works with me daily to make sure he only consumes 10g of fat through food, so fat does not gather around his heart or infiltrate his liver.

As a parent of a child with a rare disease I work really hard to understand his ever-changing condition. It is not uncommon for my husband to come home from work and find science textbooks, dictionaries and pencil/paper scattered on our living room table, as I am trying to dissect a new medical journal article. Talking with other families and looking at research are my two best avenues of preparation before doctor visits. I have met some amazing doctors, who do not resent it when I ask questions but try to work creatively with us to solve problems. A doctor told me early on, “parents of children with rare diseases quickly become the expert in their child’s disease.” It was comforting to hear a doctor recognize this but also terrifying because I did not go to school for medicine. I might wish that a medical professional could share with me all I need to know about LCHADD, but I understand that realistically when you only see 10 children a year with a specific condition, it is almost unfair to expect a doctor to be the sole source of information. We must work together as a team.

Another area of my life that has changed so much, is having to fight with the insurance company for items that my son needs to survive. When my son first arrived home from the hospital, we were told it would be too dangerous for him to breastfeed and that he needed a special medical nutrition called Lipistart. You can imagine the devastation that settled in when I learned that we were denied coverage. My husband was an Atlanta Public School teacher, and trying to pay $800 a month for medical nutrition was terrifying.  We were lucky, we were able to work with local legislators and HR to get this problem resolved, but I couldn’t shake the knowledge of what it would have been like if he was in a different job. Not all private insurance companies cover the cost of medical nutrition, and this devastates families who are already having to fight in so many different ways.  Parents and advocates have worked together for over 12 years to try and get this issue resolved for all families.  Yet, it is hard to get the right people to listen when there are so few of us. 

I still believe that people want to have compassion, want to care for others, and want to help–yet it gets harder and harder to feel this way when I see the issues of the weak and vulnerable set to the side, and that is why we need a Rare Disease Advisory Council. I may be one parent of a child with LCHADD but I am not alone in my struggle with caring for someone with a rare disease. The more people understand our journey, the better we can compassionately craft laws for the good of all.

Read Stephanie’s blog here: harryfamilyblog.blogspot.com

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April 17, 2026 - Nutrivert Inc., a developer of non-antibiotic replacements for antibiotic growth promoters in livestock, today announced it has completed the first close, raising $2.375 million, of its Series A-2 funding round of $6 million. The round was led by global animal health investor Arrow Ventures with participation from other investors. The funding will be used to further develop Nutrivert’s manufacturing, human food safety and target animal safety and efficacy packages for the company’s lead product Nutrivert LDPP. Nutrivert LDPP is a proprietary, novel, orally available, lipidated synthetic enantiomeric desmuramyl analog of muramyl dipeptide, the smallest conserved immunoactive component of bacterial peptidoglycan. LDPP has no antibacterial effect but has consistently promoted growth and improved feed efficiency in pig studies. LDPP binds to the mammalian NOD2 receptor and is the only NOD2 ligand reported to inhibit the inflammatory signal NF-κB. In pilot studies, LDPP rescued 70kg pigs from an otherwise lethal dose of porcine reproductive and respiratory syndrome virus (PRRSV) and abrogated influenza disease symptoms in piglets. The Company intends to develop LDPP for all major livestock species worldwide. Patents have been granted in most major markets. The global antibiotic growth promoter market is worth an estimated $5.8 billion. Approximately 73% of all antibiotics are fed to livestock. The market is believed to be the world’s largest drug market by volume, with ~100,000 tons of active pharmaceutical ingredient administered annually. FDA’s latest data, for 2024, show a 13% rise in U.S. livestock antibiotic use since 2017. The Food and Agriculture Organization reports that livestock antibiotics are mostly given to speed animal growth. Regulators and non-governmental organizations have called for reduction of antibiotic use in livestock, citing concerns that the global, intensive use of antibiotics, often at subtherapeutic doses, selects for antimicrobial resistance: bacteria that are “immune” to antibiotics and that therefore pose a threat to public health. Spillovers of antibiotic-resistant bacteria from livestock to humans have been documented. “Nutrivert LDPP has consistently improved feed efficiency in pigs without antibiotics,” said Bernhard Kaltenboeck, CSO. “We are excited to have the support of Arrow Ventures and our other investors in bringing a new tool that will help producers reduce production costs and reduce selection pressure for antimicrobial resistance.” About Nutrivert LDPP: LDPP is an investigational compound currently undergoing clinical evaluation. It has not been approved by the U.S. Food and Drug Administration (FDA), the European Medicines Agency (EMA), or any other global regulatory authority for any indication. The safety and efficacy of LDPP have not been established. Any mention of potential use is based on preliminary data and does not guarantee future regulatory clearance or commercial availability.
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