“Ever since I can remember, she’s been all about horses. She draws pictures of horses, writes books about horses, plays with toy ponies . . . and lobbies us hard to buy her a horse.” Unlike most eight year old girls who dream about horses, though, Annabelle has Morquio A, an extremely rare, degenerative genetic disease.
“For years Annabelle wanted more than anything to ride a horse,” recalls Stephanie, “but it never occurred to me that it was a possibility [due to Morquio A]. A colleague of my husband’s with a connection to NVTRP saw a drawing of Annabelle’s, titled ‘My Wish to Ride,’ and introduced us to therapeutic riding. Finding out about NVTRP was a treasure.”
I write today to ask you to donate to NVTRP to give the treasure of therapeutic riding to Annabelle and so many others in our community who live with disabilities. By giving to NVTRP you will allow our riders to experience the endless possibilities that come from therapeutic riding. For children living with disabilities who hear a lot about impossibilities, your gift can be life changing.
Annabelle overcomes significant challenges daily. Morquio A involves the lack of an enzyme, which leads to damage throughout Annabelle’s body, including the destruction of her growth plates and severe skeletal dysplasia, commonly known as dwarfism.
When she was just two, Annabelle had her first major surgery, which was to decompress her cervical spinal cord and stabilize her neck. As part of her recovery, she wore a large halo. A real trooper, she amazed her parents by quickly adapting to the device and getting back to the business of being a kid—dancing and singing around the house.
Just a few months later, she started walking less—which was unusual given Annabelle’s spunky nature–and then refused to walk even short distances. The doctors found that her hip shells had disintegrated, making it excruciatingly painful for her to walk. So, at four years old, Annabelle faced her second and third major surgeries to reconstruct both hips. This time, recovery involved a full body cast. It took eight months of several hours of physical therapy five days a week for Annabelle to return to her baseline of strength pre-surgery. “But she rarely, rarely complained,” shares Stephanie. “Her courage and strength never cease to amaze us.”
In 2011, when she was five, Annabelle started a clinical trial for an enzyme replacement therapy. “Until then, there were no treatments for Morquio A, none . . . Annabelle’s stamina had declined so much that she couldn’t even walk from the car to the grocery store on her own.”
“Within months of starting treatment, she started to regain her interest in things like riding her bike and playing with her sisters . . .” While Stephanie and her husband have been amazed at Annabelle’s progress, they recognize that the drug slows the disease’s progression, not cures it.
“Annabelle is small,” says Stephanie, “and she’s not likely to grow any more . . . Some days are really hard for her and the enzyme replacement treatments require weekly five hour infusions. . . She knows she’s different, and that life is not the same for her. But when she’s down, we talk about what’s good and what’s going well.”
NVTRP and therapeutic riding are at the top of that list.
In reflecting about its benefits for Annabelle, Stephanie comments on her increased strength and physical fitness, and then pauses. “But most of all, it’s about Annabelle’s state of well-being. She’s been through so much and riding at NVTRP is what brings her joy, it lifts her spirits like nothing else . . . She rides on Saturday afternoons, and she’s up and dressed in her riding clothes by 6 am on Saturdays, counting the hours until her lesson . . . to see my daughter so joyful is priceless.”
I ask you to give Annabelle, and all of our riders, the chance to experience a bit of joyfulness by donating to NVTRP by December 31, 2014. Your gift via the enclosed envelope or on-line at www.nvtrp.org will help make sure Annabelle can continue counting on a ride with Silky each Saturday. And that we keep fueling her dream of becoming a jockey.
Donations from this appeal will impact how many riders like Annabelle can participate next year. So that NVTRP can serve as many people as possible in 2015, some of our most generous donors have offered to match each first time, or increased year-end donation with an additional $50 gift, for up to a total of $6,000. More than ever, your gift matters.
Heartfelt thanks for joining us in encouraging all of our riders to dream big.
Kelsey Gallagher, Executive Director
P.S. “Therapeutic riding at NVTRP changes the story for Annabelle . . .it gives her something to focus on that’s going well, ” says her mom. Please consider donating to NVTRP by December 31, 2014 so that we can change the story for more children living with disabilities in the coming year.