Maddy is a spunky, brave, amazing five-year-old girl from Liverpool, New York. Maddy loves to spend her days making those around her laugh, playing with her toys, and being out and about with her family and peers. She has a personality that shines wherever she goes. She is a fighter, a go getter, and a change maker.
We invite you to watch Maddy’s video, read her story and subscribe to our podcast to listen to an interview with her mom & dad.
Maddy is a spunky, brave, amazing five-year-old girl. She resides in Liverpool, New York with her mom, Erin, her dad, David and her two siblings, Lilia (11) and Caraline (8). Maddy loves to spend her days making those around her laugh, playing with her toys, and being out and about with her family and peers. She has a personality that shines wherever she goes. She is a fighter, a go getter, and a change maker.
While Erin was pregnant with Maddy everything seemed to be typical until she hit 27 weeks. Erin began experiencing preeclampsia symptoms and was starting to get extremely swollen each day. She was also experiencing trouble breathing. The day after a particularly difficult night with these symptoms, Erin and David decided to go to the emergency room and once they were admitted the hospital immediately began administering tests. There was protein in Erin’s urine and her blood pressure was through the roof, which confirmed that she did have preeclampsia. During their time in the hospital the doctors were also performing amniotic fluid tests and from those results they realized that the baby was in some distress. An ultrasound was completed and a short while later a doctor arrived with the results. “He said a phrase I will never forget. He said, ‘I think we know now what’s wrong with your baby.’ This whole time I thought I would just be on bed rest and have to take it easy, but the tables turned and now there was something wrong with her,” Erin says.
The ultrasound revealed that there was a mass on the left side of the baby’s brain and the mass was affecting the baby. They later found out that the mass was a grade four brain hemorrhage that had happened sometime between 18 and 27 weeks. The hospital they were in at the time did not specialize in the specific care that Maddy would need so they transferred them to another hospital where they had to complete all the tests over again. This hospital then gave Erin and David three choices. First, they could continue the pregnancy as long as it could go and Erin would stay on medication to try and get her blood pressure to lower. The medication had some severe side effects that made Erin very sick and there were not any indications that she would be any better any time soon. Second, Erin could have a vaginal delivery, which was not the safest option for Maddy. The last option was to have a c-section in order to get Maddy out quickly to see how she does. Erin and David ended up choosing to do the c-section, as that seemed the safest route to take for both Maddy’s care and Erin’s health. The time between the choice to do the c-section and the moment Maddy was born was about 30 minutes. The doctors and staff moved swiftly to get Maddy out as quick as possible. “I think in that moment was when I really knew it was critical. She was fading fast,” Erin shares.
At 27 weeks old Maddy was born at two pounds and one ounce. She was born with the grade four brain hemorrhage that was discovered in the ultrasound. She came out crying and, surprisingly to the doctors, she looked perfect. “She was a fighter from day one. One of the NICU nurses actually told us later that they thought they had brought up the wrong baby. They just said she looked so good. She looked awesome,” Erin says. Due to the hemorrhage in her brain she quickly developed hydrocephalus, which is extra fluid in the brain. A surgery was done when she was 70 days old to put a shunt in her head in order to drain the fluid from her brain. Maddy stayed in the NICU for a total of 79 days.
After those 79 days Erin and David brought their new baby home to meet her two older sisters for the very first time and to start living life together as a family. “We had to learn so many new things and very quickly we realized she wasn’t meeting milestones,” Erin states. Maddy was not meeting the milestones that children her age typically meet, but she was continuing to do things each day that defied the odds that were once given to her. They were told by doctors that Maddy would essentially be in a vegetative state for her entire life so when she began smiling at her family, cooing, and even saying first words these moments were celebrated in a big way. Although Maddy was making great strides, she was not meeting a lot of the physical milestones expected of a child her age and when she was a year and a half old, she was diagnosed with cerebral palsy. “That was kind of shocking and a punch in the gut. Realizing that she did have a serious medical condition,” Erin reveals.
Erin and David went home with this new diagnosis for Maddy and pushed forward. As Maddy continued to grow she continued to meet milestones that she was never expected to meet. When she was around three years old, she had her first seizure. This landed them in the emergency room where she had a plethora of tests completed and was put on a new medication. They left the hospital this time with a new diagnosis of epilepsy. The medications that Maddy has been on have been able to keep her seizures at bay for over a year now.
Maddy continues to blow past the limits that were once placed on her. While physically she is at a six-month-old level, cognitively and developmentally she is right on track with other children her age. This past year she started kindergarten at her local school, and she keeps up with her peers academically. She is surrounded by love and support wherever she goes. “It is just so neat to watch her grow and do well,” Erin shares. Maddy’s amazing personality has not only been the catalyst to help herself push through challenging times but has deeply impacted those around her and continues to leave lasting impressions.
Time to get loud shouters!
Throughout the month of Mart we will be shouting love for Maddy and her family. It is a great honor to be able to tell Maddy’s story and we hope you will join us in getting to know her and her family.
So click here to shop now where every purchase will go towards replacing the patio in the back yard with one that Maddy can easily navigate. You can also start a monthly subscription and shout love for great families each month!
Join us in shouting loud for Maddy!