Baby Bron's Medical Funds

Our son Bron was diagnosed with Prader Willi Syndrome (PWS). The syndrome will impact his physical and mental state throughout his life. Please watch the video for a brief description of this fundraiser. For the full story, please click "Read more". More photos added at the bottom for everyone's viewing pleasure. Thank you!

 

 

In May of 2021, we welcomed our first born into the world. On the day Bronson (or Baby Bron) was born, we saw the most beautiful sunrise as we drove to the hospital for our scheduled c-section. Bronson was a small baby in utero, and needed to be delivered at 37 weeks. Immediately upon seeing his face and hearing his soft, sweet cry, our lives were changed for the better. Cam and I had never known a love like this.

 

Before nightfall, Bronson was taken into the NICU, as he was having trouble latching and was not getting enough sustenance without an IV. For the next three and a half weeks, we lived in the NICU with Bron, as this tiny newborn underwent all the medical tests imaginable: heart ultrasound, full-body x-rays, MRI, genetic screenings, swallow studies, continuous blood-sugar level tests (where blood needs to be drawn from his heel), and constant monitoring. On paper, Bron seemed to be healthy except for his extremely low muscle tone, which made it impossible for him to drink efficiently from a bottle. We didn’t anticipate the genetic screenings to come back with anything unexpected because we had gotten all of our genetic testing done during the pregnancy.

 

When the genetic results finally did come back, we received the most unexpected news: Bronson has Prader-Willi Syndrome (PWS). PWS is a genetic multisystem disorder characterized during infancy by lethargy, diminished muscle tone (hypotonia), a weak suck and feeding difficulties with poor weight gain and growth plus other hormone deficiency. As a person with PWS ages, a myriad of other symptoms arise, but they include extreme hyperphasia, which is defined as abnormally increased appetite for consumption of food with the inability to turn off the feeling of insatiable hunger.

 

The news hit us like a gut punch. Neither of us had ever heard of PWS. We didn’t anticipate having a child that might have special needs (who does?). Initially, we were in a state of panic, asking ourselves a million questions: What did this mean for him? How can we meet his special needs? What are his needs? Could we provide him the kind of things that would give him a better shot at handling all of his medical and intellectual challenges? Thankfully, there are organizations that offer more information to parents who have just received this diagnosis for their children, including PWAUSA and FPWR.

 

Since the diagnosis, we’ve leaned on these groups heavily, as well as other PWS parents to learn all of the things we need to do today to create a better tomorrow for Bron. Some of these things include:

 

 

Now that we know the “WHAT”, we are working on the “HOW”. The decision to have a child was not something that we took lightly. We knew we would need to budget for daycare and some medical costs, but we did not anticipate the larger scale of those costs that we are now faced with. We’re creating this campaign because we would like to be able to provide Bron with everything he needs.

 

Baby Bron is a sweet, curious, excitable baby. You would never know he had low muscle tone by the way he kicks his legs during playtime! However, the reality is that he is below the 1st percentile of growth and is severely delayed. His early development will continue to be delayed even with all of the interventions listed above, and he will inevitably be faced with the harsh reality of hyperphasia and the need for continuous medical care, but as long as we provide him with the support he deserves, his life will be better for it. That’s what we’re trying to do - provide him everything he will need just to have the best possible life he can have.

 

If we are able to meet our target goal, the donations will go towards the following for Bronson:

 

We will continue to work to provide Bronson with anything else he needs and we will always, always shower him with unconditional love as his journey progresses. We are grateful to everyone for any support they can provide to us through our parental journey. Of course, we wish we could do this on our own, but Cam and I need your help. Thank you so much for your love and support. We will make sure Bron knows that his fan club is full of generous, and loving people who he can learn from as he grows up.

 

*NOTE* This fundraiser was launched about 2 months after the video was filmed. In that time, Bronson traveled to Florida to see Dr. Miller for the first time, started growth hormone therapy and began to drink his full meals from the bottle. He has been off of the NG tube for about a month and we are hopeful that he will not need it again moving forward.