The doctors told her parents that she suffered from pulmonary stenosis, a condition characterized by obstruction of blood flow from the right ventricle to the pulmonary artery, which required immediate surgery.
When she was just 12 days old, Haven coded in the hospital while recovering from heart surgery; doctors and nurses performed CPR for 58 minutes.
Due to that lack of oxygen, Haven experienced significant delays in her speech and physical movements. Haven’s first year was full of doctors’ appointments, medicines and tube feedings.
When she reached her first birthday, Haven’s pediatrician recommended that she be evaluated at the local Easterseals affiliate in their hometown of Little Rock, Arkansas.
“When we received Haven’s official diagnosis and learned that she would have delays, we knew we had to get her the best support and we found that in Easterseals,” said Deana.
Now 10, Haven is energetic and determined when she sets her mind to achieving milestones.
She consistently meets and exceeds goals during her speech, occupational and physical therapies. Her walking has progressed from needing a physical therapist to assist her, to walking with the aid of a walker, and currently walking with only the aid of braces.
Last year, Haven reached a big milestone of independently walking in a fashion show benefitting Easterseals.
“When Haven walked across that stage, unassisted, we were in awe and so proud of her,” says Deana. “With her determination and energy, she’ll continue to defy every obstacle set before her. We know this isn’t the last time she’ll surprise us!”
In her free time, Haven gets a kick out of beating her family and friends during Uno card games, swimming, cycling on her recumbent bike, and playing with her American Girl dolls. She also loves to make people laugh and smile.
Last year, John embarked on a month-long, cross-country motorcycle journey to raise awareness and donations for Easterseals.
His motivation? Haven and all she has achieved because of the support and help of Easterseals.
“We faced many challenges during our cross-country journey, but nothing like the challenges my daughter faces every day,” said John. “Her smile, humor, and determination were what kept me going day after day and knowing that my journey was helping other kids and families living with disability. That made the adventure even more rewarding.”
Throughout John’s trek across the country, he dedicated each leg of his ride to an Easterseals client, therapist or a family member.
His ride gained national attention, which prompted a documentary and raised over $96,000 for Easterseals. His biggest fan, and supporter, remains his daughter.
“My dad rode to help kids at Easterseals,” said Haven. “They help me walk better and talk better. I know they [Easterseals] can help other kids like me.”
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