Lets help Asher Holekamp take his first steps!

Asher has a rare condition impacting the muscles in his lower body. He is one year old and cannot bear any weight on his legs. He has what is known as Distal Spinal Muscular Atrophy. One in a million people have this condition. Asher is one of them. Some doctors have told his parents he may never walk. Others believe with the right interventions, anything is possible. Every parent should see their child’s first steps, and every child should have the freedom to run and play. All Asher wants to do is move and we can help. He needs a time-sensitive surgery to release the nerves in his spinal cord and prevent further damage.

Asher’s parents, Nikki Hornstein and Mike Holekamp, were both born and raised on Vancouver Island in the Comox Valley, where they currently live with their two children, Asher and his older sister Scottie. They also have strong ties to Tofino and are very active in both communities. Nikki is a pediatric occupational therapist that works at the Comox Valley Child Development Association. She has had years of experience navigating the medical system for other families and knows how critical early intervention is to kids' success. Nikki & Mikey have been navigating this journey with so much grace and compassion for Asher and the help he needs, but it's time for us as a community to step up and help this family that has only ever shown up as wonderful, generous members of our community. This family deserves all the help they can get; helping Asher on this path has become a full-time job for his family and there's no reason they should be going at this alone.

It's so rare that we have an opportunity to affect so much change on someone's life. Let’s work together to help change Asher’s life. Let’s give him the chance to experience being a kid who can run and jump and play. Let’s help him now so he doesn’t have to know that doctors once said he might never walk. Take a minute to think about how many people have impacted your life in a big or small way with their generosity, time, money, and encouragement. Let’s help make an impact on Asher’s life.

Asher turned 1 year old in August. His first specialist appointment occurred when he was 4 days old. He was born with clubfeet, a broken femur, severe leg contractures (arthrogryposis), and at 7 months genetic testing revealed he had a rare genetic condition called Distal Spinal Muscular Atrophy. To date, he has been on 18 flights, 16 trips to Vancouver, 20+ trips to Victoria, travelled to the US twice for consults, has spent 4 nights in the hospital, recovered from 3 surgeries, had hundreds of hours of therapy and spent 24 weeks in leg casts. Despite all of this, Asher continues to greet everyone (even new doctors) with a smile on his face and hope in his eyes.  

Throughout his first year of life, Asher has shown resiliency, toughness, and a fighting spirit and his parents try to match his tenacity by doing everything in their power to put him in the best position for success. After eight months of tests, consults, follow-ups, and research, they have determined that Asher needs another surgery, this time on his spine. Several doctors believe that – based on MRI scans, presentation, and symptoms, he has a tethered spinal cord; if this is treated early enough, his nerves have the potential to heal.

Getting this diagnosis wasn’t easy. Sadly, Asher hasn’t had the best luck accessing our medical system. While his parents acknowledge the strain our medical system is under, they believe many of these tests and specialist consults should have been ordered within days of him being born. 

Asher was 7 months old before he received a referral to neurology, something that should have happened immediately, another 4 months to receive an MRI and 2 more months to hear about the results. During that waiting period, an orthopedic surgeon in Florida, who’d conducted two previous consults with the family, reached out immediately after receiving a copy of the MRI. This doctor, who has treated children with Asher’s exact diagnosis, examined and shared the images with a neurosurgeon in his office and both agreed, based on the MRI images and Asher's symptoms, a tethered cord was likely, and surgery was recommended. 

A second surgeon in the U.S., who specializes in tethered cords, was also consulted and agreed that Asher’s spinal cord is tethered. A tethered cord may impede a nerve’s ability to get the signal to the desired muscle. Without release, as Asher grows, the nerves get stretched further and damaged. Asher’s family had been asking about the BC medical professionals about the possibility of this since March, as it is common for children with his diagnosis, but their concerns mostly went unanswered. 

Upon receiving confirmation of their original suspicion, Asher’s family worked tirelessly to contact people within Canada to review these findings and help determine a course of action; this was very difficult. *Update: Asher's parents were able to speak with a neurosurgeon in BC mid-October. He was very thorough, informative and ultimately supportive of whatever route they decided to take, but the surgery will not be offered here at this time; therefore, the family will still be going to the US for surgery.

While the outcome of the surgery doesn’t guarantee anything, experts agree that for children with Asher’s condition, early intervention combined with intense rehab are the keys to success for unlocking mobility. Releasing the nerves is imperative to prevent further damage. Despite the systemic medical failures Asher has experienced, he and his family have been guided by the care and input from some remarkable professionals. This incredible team of doctors and therapists have worked with him since birth and have been pivotal to his success so far. But he needs specialized care, state of the art equipment and rehab technology to support him going forward.  

After months of pleading and waiting, Asher’s family can’t wait any longer and have made the hard decision to seek this time sensitive care in the U.S. They have booked surgery for him on November 9th and will be spending a month in Florida at the Paley Institute for pre and post-op care. The Paley Institute is world renowned for treating children with joint contractures, muscle weakness and spine abnormalities and his family believes this is the best place for him to receive care. 

Since he was born, the outcomes of all these interventions have been uncertain and that’s still the case with this next chapter. What remains certain are Asher’s desire to explore the world around him and his parents’ resolve to keep fighting for their son. He wants to move. He wants to run and play with his sister and friends. He has the will and the spirit to surpass the goals and expectations ascribed to him by medical experts, but he needs help.   

The goal for this fundraiser is twofold:

· To help cover the immediate costs of surgery and rehab in the U.S.

(about $150,000)

· To provide funds for further interventions and specialized treatment

as needed

Asher’s condition will affect him for the rest of his life in some way. His parents believe that everything they do for him now will impact what he is capable of in the future and they continue to research new treatments being offered around the world. As medical breakthroughs continue, the sky truly is the limit for children like Asher as long as early efforts match future ingenuity. Unfortunately, all these treatments – both available and potential in the future, cost money and the family has no idea what Asher will need moving forward. He has the willingness and perseverance to keep pushing and fighting through all the adversity he has faced in his short life and that which he will face in the future. His sister inspires him daily and is his greatest fan. His parents will continue to push and sacrifice all they can to put Asher in the best position to succeed. YANA Comox Valley have been connected to this family since he was born and have helped support many trips to his specialists, they are going to be helping with some accommodations on his upcoming trip as well. His immediate and extended family have provided him with so much love and support thus far but its up to us as their community to step up and help.

Please follow along with Asher’s story on @aligned.with.asher on instagram or @alignedwithasher on Facebook for further details about his inspiring journey thus far.

Immense gratitude to you all from Asher's Army of Aunties: Diana, Richelle, Amy, Arran, Tatianna & Lauren as well as Asher's entire family.

Thanks for being a party of the journey we cannot wait to share Asher's successes with you!