Support Hotline: (866) 737-5999 info@multiplesystematrophy.org
A Dream Come True

A Dream Come True

Jenna (Byron) Amster and her family justJenna (Byron) Amster on her wedding day with her dad who has multiple system atrophy
celebrated her beautiful dream wedding. Jenna
married her best friend, Josh, on 9/21/2019. It was the most special, incredible and magical weekend. Jenna and her father Marc’s shared dream was to have him walk her down the aisle and have a father / daughter dance. They did both.

Marc has three daughters. Jenna is his oldest and is the primary caretaker and healthcare proxy for him. They are best friends, self-described as two peas in a pod. They are always there for each other in every way, no matter the circumstance or what is sacrificed.

A few weeks prior to the wedding, Jenna’s dream wedding dance was in doubt. Her dad is battling Multiple System Atrophy (MSA-c) and is deeply impacted by Neurogenic Orthostatic Hypotension (low blood pressure upon standing). As such, he no longer has the ability to stand on his own and also faces several other debilitating symptoms.

 

Pulling Off a Dream Wedding While Facing Down MSA

Knowing the health challenges that Jenna’s dad was likely to encounter from Multiple System Atrophy, the wedding party prepared to overcome them. Preparation was imperative for making sure the weekend was as beautiful as possible despite the challenges that surely would arise. Marc’s family has a special care team in place 24/7 comprised of nurses, techs and aides, all of whom are medically trained and have learned the ins and outs of MSA through working with Marc. His care team was by his side all weekend long ensuring his health and safety were in check

The family also brought a few things for the wedding weekend to ensure Marc’s safety and comfort:

  • A hospital bed (rented) for the hotel room so they could have all the functionality like they have for his bed at home.
  • A portable suction machine to catch his secretions and to avoid any choking or aspiration.
  • A Nutribullet blender so he could still enjoy the foods he loves but in a smart and safe manner.
  • Liquid thickener packets so he could enjoy and tolerate his drinks.

The Wedding Day Arrives and Jenna Tells the Story


Jenna Byron Amster and her father Marc Byron“The day of the wedding was 90 degrees and humid. Dad was in a full tuxedo, looking as sharp as ever, but as everyone affected by MSA knows, heat is very scary as it can drop blood pressure. To combat the heat, we had cold wet towels hidden under his wheelchair to cool him down when needed. He always rocks sunglasses as he has extreme sensitivity to sunlight. Another of his MSA symptoms is extreme heightened emotions, whereby, he could instantaneously start hysterically crying or laughing at any given time. We all embraced it as we always do and loved every moment of him soaking up this most special day. My mother pushed his wheelchair down the aisle while I held his hand and walked right next to them.

We have been practicing our father/daughterMarc Byron using a standing wheelchair to dance with his daughter Jenna at her wedding. dance since I was a little girl. After he was diagnosed with MSA in 2015, we practiced dancing daily – we qualified it as his exercise for the day. I filmed every single one of our dances leading up to our wedding so I could continue to show him how strong he’s been for all these months, but I was growingly concerned about my dad’s ability to not quickly faint. His tolerance for being in a standing position was becoming more and more limited, so we had to come up with a solution to make this work.

A few weeks ahead of the wedding we attended the Abilities Expo at the NJ Convention Center. At the Expo, we met this gentleman named, Scott, who is a representative for the Standing Wheelchair. We made plans to have Scott come to our house so dad could demo the chair. I shared with Scott that the only time Dad would use the standing chair would be for our father daughter dance at the wedding and that we were not in the market to buy one outright. Scott was so thoughtful and generous that he said he would LOVE to pay it forward and allow us to rent his demo chair for the wedding weekend.

When Scott brought the standing wheelchair to our house the weekend of the wedding, dad and I practiced multiple times a day. He was able to dance with me standing upright for about 30 – 60 seconds before we knew he had to bring him to a seated position and elevate his legs. He did not faint or lose consciousness during any of our practices. We also had at least two other people, whether family members or care providers, spotting us as we danced, and helping to reposition dad when needed.

Despite having MSA, Marc Byron dances with his daughter Jenna at her weddingOn the day of our wedding, with all the overwhelming emotion, excitement, nerves, etc., after a hot outdoor ceremony, it was time for dad and I to dance. As a gift to my dad, I wrote him a beautiful love song that our band so generously learned and sang for our dance. The moment had come, my mom had just finished reading the speech my dad had written for us, and up he went in the chair. He was able to stay upright standing during our dance for 45 seconds before his pressure dropped. He lost complete consciousness. My mom, sisters and his nurses ran over to us, helped get him into a seated position and raised his legs. He came to in about 3 seconds. Our family had anticipated this, which is why we were so prepared; but this was something our 250 guests had never seen before so it definitely caught people off guard. Although they were touched, it was also very frightening. Despite the episode, Dad and I finished our dance by hugging, singing, crying and smiling. It was one of the most beautiful moments that the whole family and our friends said they were lucky to witness. It was truly the most special and magical moment that I could ever have.

Dreams really do come true!

I hope this inspires others with MSA or affected by MSA to live their dreams and imagine the impossible, because we did, and it was the best day of our lives!!!”

Fundraising for the Multiple System Atrophy Coalition

Jenna and her family have created two fundraisers, one through Facebook and the other on GoFundMe Charity Page, both in support of the Multiple System Atrophy Coalition.

Jenna’s Personally Written Song To Her Father