By Kerry Butrick Dowling
New Windsor parents Steven and Courtney Zurlnick, parents of ten-year-old Christopher “CJ”, eight-year-old Ella, and three-year-old Jack, know having an army of support around you in challenging times is often what keeps people going. They know this firsthand having a child with special needs. Shortly after turning six months old, daughter Ella began to display signs of not typically progressing and eventually began having seizures.
“When Ella was about six months I picked her up and noticed that her shoulders lifted almost to her ears. There was no resistance. It was then we followed up with the doctor and were sent to a specialist, where we were told she had low muscle tone. From that point forward, she did not meet most of her milestones. It was right around six months when we started early intervention as well,” Ella’s mother Courtney Zurlnick shared.
Zurlnick explained that together the couple decided she needed to leave her job as a teacher and focus on Ella’s needs full time. Her days were quickly filled with appointments, phone calls, phone meetings with doctors in other parts of the country and researching as much as she could to help their daughter get the best care possible. Zurlnick fought diligently to get the assistance needed for her daughter from in-home nursing, therapy programs and schools with programs designed to meet her needs to myriad neurological testing. The battles and obstacles in her way were often daunting, but Zurlnick pushed on, dedicated to connecting her daughter with the right people to help give her the best life possible.
In March of this year, Zurlnick received a phone call that had been years in the making. Doctors at Boston’s Children’s Hospital had discovered that Ella carried a rare gene for atypical Rett Syndrome. The atypical diagnosis explained why she exhibited characteristics of Rett, yet her medically complex life and symptoms were unique for the disease. Rett Syndrome is a rare genetic mutation most commonly affecting brain development in girls. Children seem healthy during their first months of life, but often eventually rapidly lose coordination, speech and use of the hands.
During the trials and tribulations of raising a medically complex child, Zurlnick shared that the idea to create a foundation to help other families came to be.
“Starting the Ella Rose Foundation has always been a dream of mine, which was fully supported by Steve. When Ella was younger, we were blessed to find foundations and organizations to financially and emotionally support us on our journey. Steve and I have always wanted to pay that forward and are so excited to be able to do that. We are well aware of the costs associated with raising a special needs child and how it can affect every aspect of your life. If we can provide help with the cost of equipment, medications, food, trips, or any other assistance that might be needed, we are fulfilling our mission,” she explained.
After speaking to friends and family about the idea, the Zurlnicks were advised to reach out to the Community Foundation of Orange and Sullivan to start their foundation. The Community Foundation of Orange and Sullivan provides a 501(c)3 charitable umbrella for individuals, families, organizations and businesses who are seeking to accomplish their charitable goals.
Community Foundation of Orange and Sullivan President and CEO Elizabeth Rowley, CFRE, shared that the passion displayed by the Zurlnick Family to help others was evident within their first meeting. “It was obvious right away that Ella’s mom Courtney had serious passion and vision for helping others in the community who have children with disabilities. She was overflowing with ideas on ways to raise funds and create excitement around the mission of giving back to families in need,” shared Rowley.
In March, the Ella Rose Foundation was finally established. The Ella Rose Foundation will support families of and children with special needs, and funds raised will support costs associated with medical equipment and care of children, along with providing opportunities for those with special needs to thrive. With countless local foundations here in the Hudson Valley, the Ella Rose Foundation will fill a void that will offer support to local families with children who have special needs.
“I think that the Ella Rose Foundation will fill a unique niche locally, helping families purchase supplies, equipment and essential items along with providing emotional support for other families in similar situations. There are so many wonderful organizations providing direct services to children with special needs, but there are few resources for all of the ‘in between’ items that make life much more comfortable and manageable,” shared Rowley.
As a newly established foundation, the Ella Rose Foundation will make its debut during Hudson Valley Gives on Wednesday, May 17, 2023. Hudson Valley Gives is a 24-hour event that brings seven New York counties together with one goal: to bring exposure and raise funds for hundreds of charities here in the Hudson Valley.
“We are thrilled to be part of Hudson Valley Gives for the first time. It’s an amazing opportunity for the Ella Rose Foundation to gain exposure and raise money so we can start helping more families. The platform is user-friendly, and we are hoping to see donors come out to support us on May 17,” shared Zurlnick.
In addition to Hudson Valley Gives, the Ella Rose Foundation has a fundraiser planned for August 25, 2023 at Newburgh Brewing Company and a ticket fundraiser with the New York Yankees for select games in July.
“We have met the most amazing people because of Ella in the last eight years. Friends, nurses, and support staff who now truly feel like family. Each of them has help lift us and made it possible to keep moving forward. We are forever grateful for these exceptional people. We’re looking forward to this next chapter and being able to pay it forward with the Ella Rose Foundation to other families here in the Hudson Valley,” said Zurlnick.
For the latest information on fundraisers and news about the Ella Rose Foundation, visit www.ourspecialneedsworld.com or on Instagram: ella_rose_foundation.