Hi, I’m Emily, and this is my son Markus

Thank you so much for being here. The love, kindness, and support you’ve shown us has meant more than I could ever put into words. Markus is a strong, joyful little boy with complex medical needs, and this fundraiser was created to help give him access to therapies that could truly change his life. Whether you’re able to donate, share, or simply take the time to read his story, please know how deeply grateful we are for you and for standing with us on this journey.

Markus is three years old and is a severely medically complex child. He has multiple diagnoses, including hypotonic cerebral palsy and West syndrome — both rare diagnoses — along with dysgenesis of the corpus callosum, epilepsy with multiple seizure types, autism, cortical visual impairment, feeding difficulties requiring a g-tube, dysplasia, and significant mobility and developmental delays. He has already undergone surgery on his right testicle and has had multiple MRIs and EEGs, with more testing ahead as we continue searching for the root cause of his symptoms.

In daily life, Markus relies on extensive medical and adaptive equipment to stay safe and supported. He uses a pulse oximeter, suction machine, cough assist, and emergency oxygen. He also requires adaptive equipment including a bath chair, safety floor seat, activity chair, stander, and wheelchair. Alongside this, Markus currently attends physical therapy, occupational therapy, and speech therapy, and will soon be starting vision therapy to support his cortical visual impairment. This is our normal — and it is constant.

From the time Markus was a baby, I knew something wasn’t right. There were small signs that I questioned again and again. I spoke up. I asked for answers. I specifically asked doctors about seizures and cerebral palsy. I was repeatedly told that what I was seeing were reflexes, and that cerebral palsy was unlikely because Markus had strong arms and legs. I was told there was no other underlying cause beyond his brain malformation. At one point, we were even denied by the cerebral palsy clinic — I wasn’t asking for a diagnosis, I just wanted someone to truly look at my child.

Instead, Markus was overlooked.

Because of delayed and missed diagnoses, we lost precious time — time when early intervention could have made a significant difference. That time is gone now, and as a parent, that loss is devastating. Not because I didn’t advocate, but because my concerns weren’t taken seriously.

Two weeks before Markus’s g-tube surgery, he had his first grand-mal seizure. He was losing consciousness and turning blue because he wasn’t breathing. I rushed him to the ER. We followed up with neurology and completed an EEG, but I was told they didn’t see anything definitive — only what they described as the “possibility of a perfect storm.” Markus was started on anti-seizure medication, yet seizures continued.

When we went to the hospital for what was supposed to be a routine g-tube procedure, I explained everything we had been experiencing. While there, Markus had another grand-mal seizure right in front of hospital staff. What should have been a short stay turned into a six-day hospitalization at Barbara Bush Children’s Hospital. Since then, seizures have become part of our daily life, and seizure-free days are rare.

We have recently begun care at Boston Children’s Hospital, and for the first time, Markus is being seen as a whole child. We are in the process of transferring all of his care there. He will be followed by the cerebral palsy clinic and the spasms epilepsy clinic, and we are continuing genetic testing to better understand the full picture of his medical complexity.

As a Maine-based family, this means frequent long-distance travel, time away from home, and significant out-of-pocket expenses — but after years of being dismissed, we are ready. Ready for answers. Ready for progress. Ready for hope.

I am a single mom and have been Markus’s sole caregiver since birth. Every appointment, therapy session, hospital stay, sleepless night, emergency, and medical decision has fallen on my shoulders. I wouldn’t change being his mom for anything — but caring for a medically complex child is emotionally, physically, and financially overwhelming.

This GoFundMe was created to help Markus access life-changing intensive therapy. This program requires three full weeks of therapy, along with travel and lodging, and it is not covered by insurance. This type of therapy has helped other children with needs similar to Markus’s, and I truly believe it has the potential to change his life. I will be alongside him during these sessions, learning how to continue this work at home so we can build on the foundation they create.

This fundraiser is about more than money — it’s about advocacy. It’s about medically complex children who are overlooked, parents who aren’t heard, and the irreversible cost of delayed diagnoses.

If you are able to help by donating or sharing Markus’s story, please know that every share matters and every dollar helps. We’re getting closer every day, and with your support, Markus can have access to opportunities that were delayed through no fault of his own. Thank you for believing in him, standing with us, and supporting our journey