Marley came into this world as a fighter but also lucky enough to have a mom who would never give up & always believed anything is possible.

Marley spent 1st week of life in the NICU due to respitory & cardiac distress. She had 1st major surgery at 5 weeks old, had hip & spine surgery around age 3, and a dozen or more ever since.

Marley was always happy & active. Didn't walk till age 4 1/2 but learned how to run not too long after. Her mom put her in aquatic & horse therapy, fun special needs camps & adaptive sports programs. Marley was so inspiring & but also very medically complex.

Heather went to nursing school as soon as Marley started kindergarten and got BSN in 2016. Went on to work at St. Louis Children's hospital on neurology unit caring for kids similar to Marley. However Marley also became a frequent patient in the hospital and Mom went from full-time to part-time to Prn. But she never left Marleys side, wanting to be an advocate and voice for her.

Heather 1st told the doctors she noticed decline in Marleys mobility in 2016, some test were done but nothing came of it. In 2019 we had to get her first wheelchair.

2020 moved to Colorado so that Heather could get paid to be Marleys Private Duty Nurse. Heather believed moving, covid & becoming teenagers were the reasons Marley started to sleep all weekend and rarely wanted to go outside or play at the park, those things might have played a little part in it. But with intensive Autism ABA therapy it became clear that this was medical and not behavioral.

Heather was able to keep Marley out of the hospital from 10/2019 to 01/2023 by advocating for surgical procedures prior to that time frame that made it possible for her to provide nursing care & decrease trips to ER.

Since February 2023 the mobility decline has impacted Marleys ability to walk around her already accessible wheelchair friendly home. Marley has had multiple ER visits back to back & hospital admission & discharges before she was medically stable.

With Heathers medical background as nurse she is spending countless hours researching rare diseases asking for referrals and communicating with all her specialists.

But that happy active girl we were all so used to seeing is slowly losing her joy because she is hurting and needs answers.