Human beings are such incredibly complex systems. Even with modern science and education, most of us know only a summary of how many of these systems such as genetics and hormones work. That is, until something changes in your life making it suddenly quite relevant to you. That’s how it was for our family a few months ago when our second child was born. It was a difficult birth but additional challenges became apparent after she was born. She had difficulty keeping her temperature up on her own and needed a warming bed for a few days. Her breathing wasn’t quite strong enough and she needed oxygen for a few weeks to keep her levels up. She struggled with feeding by mouth and switched to eating primarily by feeding tube. At first the medical staff thought her hypotonia or low muscle tone may be due to the difficult birth and she would catch up quickly. When that didn’t happen we kept testing for new things and checking them off the list. Nothing came up in her initial genetic screening because her syndrome requires additional specialized genetic tests to determine. We waited for the results for two more weeks in the NICU before we finally had a confirmed diagnosis. It seemed like an eternity to us but we are grateful for getting the diagnosis as soon as we did because it means we can start treatment for her from a very early age. There is a wide range of potential outcomes for people with this syndrome.

The cover photo above was our view from the NICU at St. Joseph’s Hospital in Tacoma, WA where Ripley was born in early September, 2022.

Mayim Bialik who has a doctoral degree in neuroscience says in a video for the Prader-Willi Syndrome Association’s YouTube, “Prader-Willi Syndrome is the leading cause of [life-threatening] childhood obesity and it affects approximately 1 in 15,000 births. People with this syndrome constantly feel hungry. They don’t have the ability to ever feel full, so without support this can lead to life-threatening obesity along with many other medical complications. If not closely monitored, individuals with PWS can potentially die from over-eating. In addition, people with PWS suffer from a number of other symptoms including medical, psychological and developmental challenges.” Please watch the rest of this short video for more information:

Thankfully Ripley continued to get stronger and more independent until she came off oxygen and eventually out of the NICU after roughly a month. Immediate acute concerns faded and our focus turned to the long term. Prader-Willi Syndrome (PWS) is a condition caused by a random deletion of a snippet of DNA from (in our case) the paternal copy of chromosome 15. Because of this people with PWS have a variety of issues with their hormones. Most commonly they have low growth hormone levels which logically affects height but actually effects so many parts of the body. Brain development, breathing-related muscles, the muscles in her throat that prevent asphyxiation, so many things that most people take for granted. Our daughter also has low puberty-related hormones and some concerning preliminary results in thyroid and cortisol hormones. We’ll learn more about what treatments she will need as she gets older and we get more test results. You can learn more on the website for the Prader-Willi Syndrome Association USA (There are chapters in other countries as well):

We have been fortunate in many ways. We live in reasonable driving distance to Seattle Children’s Hospital which houses a Prader-Willi Clinic that serves patients in multiple surrounding States. Our midwives, doctors nurses and others at the hospital where we stayed as well as the specialists at Seattle Children’s have been a real blessing and we deeply appreciate them. Beyond that we are also fortunate that treatments for the condition have been developed and more are on the way. There are potential treatments for some of her more difficult symptoms such as hyperphagia and well-established and reliable treatments for hormone imbalances. The main thing for young children diagnosed with PWS is to start growth hormones as quickly as possible. Our child started on Genotropin growth hormone only a couple weeks ago and we already see a difference. She is stronger, more active, stays awake longer, is more vocal and able to do things like hold up a toy above her head for the first time. Her doctors say that she will need a growth hormone injection every day for the rest of her life for her to have the best possible health outcome.

We have had some trouble with delays and supply chain problems for medical supplies such as feeding tubes, so we decided to order her growth hormone refill with plenty of time to spare. We made the order feeling grateful for this life-changing medicine helping our baby have the best start to life that we can give her. Then we got this text message:

Despite having good insurance, our copay for her growth hormones is over seven hundred dollars a month. We certainly don’t have that kind of extra money lying around. With medical bills piling up from the pregnancy, birth by c-section, after-birth care, NICU stay, pediatrician, specialist visits and various medical supplies such as feeding tube equipment, the situation begins to dawn on us. With a lifetime of needed medical care for our baby ahead of us, we need to figure out how to approach all of this financially. We deeply appreciate all the help from family and friends we have received so far, but this new bill was unexpected. Taking away the medicine that we can see is making her stronger by the day is not an option. We are looking at long term solutions like financial aid programs. In the meantime our baby needs her growth hormones and the only way to get our refill right now as it stands is to come up with that $720. Our goal is to raise this amount by next Friday, January 13 to order our refill. We apologize for the last minute nature of this request and we greatly appreciate you taking the time to read this, share it, and for any contributions you may be able to make. 100% of contributions will go towards her medical care. We will continue to blog about Ripley’s journey with Prader-Willi Syndrome.

This fundraiser will have multiple ways to contribute and it will all be counted here in a follow-up blog post at the end of the week and on our social media pages. Let us know if you wish to remain anonymous with your contribution.

• You can contribute by PayPal by sending to stuartreed@gmail.com with “Ripley” in the note.

• You can send via Venmo to Stuart-Reed-1

• Donate via Ethereum: 0xcc9b3f50d1beFDA707Ff0B1a808E4e1f1AA15Eb4

• If you would like to donate another way contact me.