After Eliana was born, we spent five months in the NICU of our local children’s hospital. I quickly realized how isolating our new journey was going to be. Research has shown that people who have unique experiences tend to report less positive feelings and a sense of exclusion compared to those who had shared, ordinary experiences. I would discover that this is the reality for special needs families--because our daily lives are so different from a typical family, many times it is hard for others to relate to us and for us to relate to them. When you compound this with all the other obstacles we face on a daily basis, maintaining relationships becomes all the more difficult and the feelings of isolation start to settle in.
An African proverb says that it takes a village to raise a child. This implies that we can’t do everything ourselves, that we cannot be isolated, that we must be willing to accept help. Unfortunately, this is not something that comes naturally for me. I believed that I should be able to care for my child and continue in my roles as wife, teacher and coach without any extra support because that is what mothers are supposed to do.
No matter how much I thought I could do it all, I was quickly shown that I was wrong. I was immediately denied the chance to do even the most basic tasks expected of all new mothers like holding, feeding, bathing, even dressing my child. Because of Eliana’s condition early on, these tasks were carried out by highly skilled nurses and medical equipment.
Not being able to adequately care for my child, made me feel like a failure, and as our hospital stay went from days, to weeks, to months, I realized that other roles that I was used to doing were also being challenged. I had to take an entire semester off from teaching, I would no longer be able to coach and how could I juggle all this and still be a good wife. So when others started to offer help, I struggled to accept it, because in my mind accepting help was showing weakness and was forcing me to acknowledge my own shortcomings.
Shortly after we got home from the NICU, I discovered an online Facebook community that would eventually grow into the FamilieSCN2A Foundation Global Support Network. Earlier I mentioned that research has shown that people who have unique experiences, like we were having, tend to feel isolated and have an increase in negative feelings. But conversely, research also shows that positive feelings can be amplified through shared experiences. Researchers found that people who shared the act of eating a piece of chocolate together, with another person, reported enjoying it more than those who ate it alone.
Discovering my SCN2A Family meant I was no longer eating my chocolate alone--I was now sharing my experience with people who understood and could offer me unique support that I couldn’t find anywhere else--my village was growing. Over the last 7 years, that village has become more like a booming metropolis, growing exponentially to include countless doctors, nurses, teachers, therapists and other SCN2A families, who have all helped to fill in the areas where I am lacking, to make our lives complete.
Through this journey, I have come to the realization that accepting help is not a weakness; it actually takes an immense amount of strength to not only confront your shortcomings but to then allow people to share in your experience. I am so grateful for the support that my online SCN2A village provides for me everyday--now, who wants some chocolate?
Frequently Asked Questions
Drugs typically have to clear multiple clinical trial hurdles in order to support approval. The typical trial phases are 1, 2, and 3 with lower number being earlier trials and larger numbers being more advanced trials.
Phase 1 trials are typically in healthy volunteers and are evaluating initial safety, and dosing in humans. These trials help ensure that the drug is safe enough to be evaluated in patients and also are used to identify an appropriate dosing range for subsequent trials.
Phase 2 trials are typically used to provide proof of concept (that the drug has an efficacy signal, is providing a benefit to patients) and also tests safety in the patient population. These trials often are used to help design and power registrational phase 3 trials.
Phase 3 trials are often the trials used to support the approval of the agent and may be the final clinical hurdle a drug needs to pass in order to be approved by the FDA.
This is a designation granted by the FDA when a drug is being developed to treat a pediatric condition that is serious and life-threatening and occurs in under 200k people in the US.
This is a program used by the US government to incentivize drug development for pediatric rare diseases. If a drug is approved that has been granted the rare pediatric disease designation, then the developing company receives a voucher that grants priority review of a future drug (which can accelerate the developmental time of a drug by ~4 months; for example: if drug#1 is approved and had been granted the rare pediatric disease designation then said company would receive a priority review voucher that they could use on drug#2 ).
This is a designation granted by the FDA when a drug is being developed to treat a rare disease (occurs in under 200k people in the US).
This is a program used by the US government to incentivize drug development for rare diseases. Drugs awarded this designation received a number of incentives by the FDA including: 1. Market exclusivity for 7 years post approval, 2. A waiver of application of user-fees, and 3. A 50% tax credit for clinical testing expenses