Lily was diagnosed with Phelan-McDermid syndrome (PMS) when she was four years old.

Lily has always been a joyful, smiling, and outgoing child. She was born at 35 weeks and spent her first week of life in the NICU. As a solo parent, caring for a newborn on my own was challenging, but Lily did everything she could to make it easier on me. Little did either of us know that our journey was about to become much more difficult.

As Lily grew, it became clear that she was developing differently from her peers. She reached milestones, but she was often the last in her peer group to achieve them. At 18 months, her doctor referred her for a developmental screening. Because she had been born prematurely, she was evaluated using the 12-month scale, which she barely met.

After Lily turned two, I insisted that she be evaluated again using the scale for her actual age. This time, the results showed significant developmental delays and led to an in-depth evaluation that lasted several hours. When we received the 30-page report, the conclusion was clear: Lily had autism.

While I was still processing this diagnosis, Lily became sick. During a doctor's visit, they detected a heart murmur. We soon learned that she needed urgent open-heart surgery, which understandably put everything else on hold.

Several months after Lily recovered, we finally met with the neurology team at Children's Hospital Colorado. They recommended genetic testing, and after months of waiting, we received the answers we had been searching for: Phelan-McDermid syndrome. PMS explained Lily's developmental delays, autism, heart condition, and many of the other challenges she faced.

Several years - and a great deal of learning - later, we have a clearer understanding of Lily's future. She will always have developmental delays, and she will likely need lifelong care and support. She may never live independently, drive a car, or experience many of the milestones that others take for granted.

The challenges associated with PMS affect our daily lives. Lily experiences anxiety and aggressive outbursts, struggles to sleep, and requires constant supervision to keep her safe. She elopes, meaning she may run away from school, home, or public places. She is also extremely sensitive to loud noises, including cooking sounds, power tools, lawn mowers, and motorcycles. Her reactions can be so intense that we limit our outings and rarely visit restaurants, grocery stores, or other crowded or noisy places.

Sleep is another major concern. Lily wakes several times each night. I have found her outside in the rain on the swings, playing in our detached garage, and wandering through the house - often leaving a trail of destruction behind her. I have installed alarms on our doors and windows to alert me if she leaves the house, but she is growing quickly, learning how to manage locks, and getting faster by the day.

These are the reasons we need the support of 4 Paws for Ability. A specially trained service dog could change Lily's life - and mine.

A service dog could help calm Lily during outbursts by applying deep pressure and providing comfort. The dog could support her sleep routine, help prevent elopement by being tethered to her, and locate her if she becomes lost. A service dog could also assist with mobility by helping Lily navigate uneven surfaces, stairs, and other situations where she needs extra support.

Although Lily can walk, she tires easily - often after about two blocks - and has difficulty with proprioception, or sensing her body's position and subtle changes in the ground beneath her. This makes her more likely to fall or bump into things.

These are only some of the ways a service dog could help Lily and our family. For me, knowing that my child is safely asleep across the hall would bring peace of mind and allow me to rest. A service dog could also give us the freedom to enjoy dinner with family and friends, participate more fully in our community, and feel less isolated by the challenges we face.

Please consider helping us reach our fundraising goal so Lily can receive the service dog she needs. Donations do not come directly to me; they go to 4 Paws for Ability in Lily's name. Every contribution, no matter the amount, brings us one step closer to greater safety, independence, and connection for Lily.

Thank you for supporting us and becoming part of Lily's journey.

Training a service dog to meet our child’s requirements can be very costly. On average it costs between $40,000-60,000 to raise, train, and place a service dog at 4 Paws for Ability. While 4 Paws for Ability fundraises to help cover a significant portion of this cost, families are tasked with raising $20,000 of that amount or $23,000 if receiving a poodle, doodle or papillon. We hope that we can receive assistance from our beloved family and friends to help make our service dog dream a reality.