Trach Ties & Chunky Thighs: Jade's Journey

Jade’s journey began almost a year ago, when she was born to our brother Jake and his wife Alyssa on July 15, 2021. Jade spent 4 days in the NICU before her transfer to Children’s Hospital in Milwaukee, where she was diagnosed with Hypophosphatasia - a rare genetic condition that causes abnormal development of the bones, resulting in further complications with breathing and eating. Jade was intubated the first 3 months, and then underwent surgery for a tracheostomy as well as a G-tube. Unfortunately, after many attempts to wean her from the ventilator, she still depends on this to breath.

Jade was lucky to have been diagnosed when there was finally a treatment for HPP, and she received enzyme replacements to promote bone growth. She will continue to receive injections 3x weekly for life.

Thankfully, after 7 long months in the hospital, Jade’s journey continued as she was finally able to go home! We are so blessed to be approaching her 1st birthday, a milestone that was at first uncertain. She loves to smile, kick her feet, and listen to books.

While grateful for Jade’s continued progress, this has not been an easy journey for Jake or Alyssa. Care is needed 24/7 by an officially trained caregiver, and because they have been unable to secure a home health nurse, Jade can only be alone with her mom and dad. Both Jake and Alyssa continue to balance working full-time and providing care for Jade.

Jake and Alyssa have to take off work at least once a month for follow-up appointments in Milwaukee. This, combined with increased gas prices and additional medical supplies, creates a financial burden for the family.

Many of our friends and family asked for ways to support Jade, Jake, and Alyssa on their journey. We are so appreciative of the kindness and generosity shown in Jade’s first year. We hope we can continue to support them on this lifelong journey, and we appreciate any help you can offer.

Love,

Auntie Jessie and Aunt Sam