The Unmet Needs Fund Helped Haylee: Jess York
Our daughter, Haylee, is six and has been living with pulmonary hypertension (PH) for three years. This diagnosis changed our lives. There are so many daily activities that are a struggle and are, at times, impossible for Haylee, like simply walking a short distance. We were able to get an electric wheelchair approved through insurance. She named her chair, Twylight, and uses it daily at school to make it through her three-hour day.
We do many activities on the weekends, several of which require a lot of walking, like going to the zoo. Twylight helps Haylee experience these special days a whole new way since she’s not fatigued and breathless after just an hour. For a change, she has us trying to keep up with her instead of the other way around.
We really wanted to bring Twylight home every weekend, but getting it there from school wasn’t easy. Portable ramps were either too big, too small, too heavy, or just not easy to transport. What we needed was an auto lift, which would make it easy to pick up Twylight and take it back to school.
Unfortunately, these lifts are pricey and not in the budget of a family with a child with PH. Auto lifts are not covered by insurance, since insurance will not cover home or van modifications. There are not many organizations that have grants or funds for items such as these.
Then we heard about Team PHenomenal Hope’s Unmet Needs Patient Impact Fund, which is to be used for the non-prescription needs of PH patients. The process was easy and fast. This fund helped us to obtain a safe and convenient way to transport Twylight.
Watching Haylee use her power wheelchair is a beautiful, heart-warming sight. The smile on her face touches your heart. She deserves to explore and enjoy the world just like any other child. Twylight helps her do that, and now we are able to have it there for her whenever she needs.
We are so grateful to Team PHenomenal Hope for bringing that smile to Haylee’s face!
One thought on “The Unmet Needs Fund Helped Haylee: Jess York”
I was diagnosed in September 2017 PAH. I am on oxygen 24/7 & have to do things slower now & sit down to rest for my oxygen
level to come back up after doing light house work or food shopping.
I was wondering if there is gear/t-shirts to buy because no one seem to know about this rare deadly disease.