Mikey Needs Your Help: Facing Medical Challenges

Help Support Mikey's Journey: A Fight for Life and Hope

At 21 weeks pregnant, we received life-altering news. Our son Mikey was diagnosed with Congenital Diaphragmatic Hernia (CDH), a rare and life-threatening condition. We immediately sought out a specialist in St. Petersburg, FL, who had experience with treating babies and children born with CDH. Little did we know, this was just the beginning of a long, challenging journey for our family.

The Early Struggles

In September 2020, during the height of the COVID-19 pandemic, Mikey was born via an emergency C-section. While we had planned for a scheduled induction, things took a sudden turn when Mikey became stuck at the pelvic bone. He was born unable to breathe and needed immediate intubation. Mikey was rushed to the CDH unit at Johns Hopkins All Children's Hospital, where he was placed on ECMO (the highest level of life support) just three days into his life. For 26 days, Mikey’s survival depended on this life-saving treatment.

On day 4, Mikey underwent a major surgery to repair the hole in his diaphragm and reposition his organs. The battle for Mikey’s life continued as he spent the next 6 months in the NICU. During this time, Mikey faced multiple surgeries and medical procedures, including the placement of a G-tube, a Nissen fundoplication, skull surgery, TLA (Total Laparoscopic Appendectomy), a second hernia repair, and a tracheostomy at 5 months old.

A Surprising Diagnosis

In addition to the CDH diagnosis, genetic testing revealed that Mikey carries the FGFR2 gene mutation, leading to Pfeiffer Syndrome—a craniofacial syndrome that affects Mikey’s skull and brain development. This news was devastating, as doctors told us Mikey’s condition could severely impact his ability to walk, talk, or eat by mouth.

The Road to Recovery

Despite all odds, Mikey began to fight back. At 1 year old, we started daily therapy, including physical, speech, and occupational therapy. Mikey never crawled, but after years of hard work, he began walking at 2.5 years old. His progress has been nothing short of miraculous, but it has also required an immense amount of effort, therapy, and love.

However, Mikey’s medical journey didn’t stop there. His condition continues to present challenges, and he has been in and out of the hospital multiple times. He requires around-the-clock medical equipment, including oxygen machines, a ventilator, a pulse oximeter, a heated collar for night time, and numerous medical supplies. These supplies are essential for Mikey’s daily care and survival.

The Need for Support

We also need to travel frequently for Mikey’s specialized care. This means long drives to St. Petersburg and even out-of-state trips to see specialists in Tennessee, Georgia, and Texas. With all this travel, we purchased a van when Mikey was 8 months old to ensure he had enough space and comfort for his equipment and medical needs. However, after years of use, the van has experienced significant wear and tear. We now face the tough decision of either repairing the van or purchasing a new one that will meet Mikey’s needs.

Recently, Mikey had a serious health scare. A week before Christmas, he woke up struggling to breathe. We quickly put him on his ventilator and called 911. During this emergency, Mikey went stiff and began having seizures. He was rushed to the hospital, where he had multiple seizures and was diagnosed with epilepsy. This new diagnosis adds another layer of complexity to Mikey’s care.

Why We Need Your Help

Even though we have insurance, it doesn’t cover everything. We often have to pay for extra supplies and equipment, which can be a financial burden. Our family’s primary source of income is Michael, Mikey’s dad, who has limited work hours due to Mikey’s extensive care needs. We do not have access to nursing help or any additional financial support. With two other children, Maddie (14) and Mallory (13), to care for as well, it’s become increasingly difficult to meet all of Mikey’s medical, travel, and daily living expenses.

Your generous donation will help cover the cost of:

Medical expenses not covered by insurance, including specialized equipment, medications, and procedures

Travel costs for ongoing appointments and second opinions from specialists in other states

Van repair or replacement to accommodate Mikey’s medical equipment and travel needs

Ongoing therapy to support Mikey’s development and give him the best chance at a normal life

Every donation, no matter how small, will help us ensure Mikey has the care and support he needs to thrive. We are incredibly grateful for the love, support, and kindness from friends, family, and strangers who have been part of Mikey’s journey so far. Your contribution will make a world of difference for Mikey and our family.

Thank you for being part of Mikey’s story and helping us give him the chance to live a full, happy life. Your support means everything to us.

With love and gratitude,

The Senecal Family