Hello there, my name's Parker. My wife and I are looking for donations as we go through life’s journey seeking medical treatments for her Hypophosphatasia. Currently, our biggest financial concern is having enough money for specialist visits and to cover the out-of-pocket cost for medications.

Since Marley was young, she experienced the symptoms of hypophosphatasia, also referred to as HPP: constant fractures, loss of her baby teeth at age three, chronic pain that was often attributed to growing pains, and the inability to receive treatment or a proper diagnosis due to the rarity of HPP.

In her teen years, slight progression of symptoms began to occur: fractures in her adult teeth occurring without reason, stiff yet hypermobile joints prone to dislocation, and migraines. As time passed, the progression of her symptoms slowly accelerated. Over the course of the last six months, I’ve watched my wife go from running multiple miles a day to being unable to walk short distances without a cane for added stability and support. Due to multiple fractured and broken teeth, she has been confined to a diet of soft or liquid foods for the past few months.

Before her symptoms progressed, Marley devoted her time working as an STNA in end of life care and rehabilitation. She especially loved when she had the ability to work in memory care and with MRDD patients. While her disability has taken the ability to do this work- it hasn’t taken her love for caring for others. Marley still stops in to visit her patients, showing them the same love she always would. While at home Marley enjoys cooking complex dishes, getting lost in books, watching sci-fi movies with her husband, and playing Stardew valley with her sister.

There is currently only one treatment for HPP, an enzyme replacement therapy called Strensiq, or Alphotase Alfa. It is an injectable treatment used every three or six days long term. While Marley has been prescribed this by her endocrinologist, we have faced an uphill battle with insurance approvals.    If these treatments fail, or she is unable to obtain them, then the other choice is simply symptom management, palliative care.  

Our goal with this GoFundMe is to help fund Marley’s medical treatments and to help with the day-to-day costs of basic living.