A mother in California is seeking treatment for her two young boys, both of whom were diagnosed at early ages with a neuromuscular disorder called Cerebral Palsy.
Nikki Miller’s two boys, 3-year-old Carson and 2-year-old Chase, were both diagnosed with the disability despite their mother having normal pregnancies. Miller told Opposing Views that to this day, doctors are unable to figure out why both of her boys have Cerebral Palsy, as there seemed to be no complications from the pregnancies.
“Carson was diagnosed at 14 months with 'mild' Cerebral Palsy (CP) due to some delayed developmental milestones,” Miller wrote on her blog MPowering Women. “Later, as Carson grew he was specifically diagnosed with Spastic Quadriplegia (a form of CP that affects all four limbs). Carson has higher tone through out his body which makes using his arms, fingers, legs and feet more challenging.”
As a result of the CP, Carson experiences days that are more difficult than others, even when it comes to doing seemingly simple things like “picking up a cheerio.”
“Carson practices walking with a walker, sitting on a backless bench to strengthen his core and does countless types of therapy to teach his mind and body to communicate more effectively,” Miller explained. “Everything is work for him and yet he does most of it with a smile on his face.”
Chase was diagnosed with the disability after his mother noticed he wasn’t walking at 16 months old. “While many assured me he was just a late walker, intuitively I knew something was different,” Miller wrote. Chase’s formal diagnosis was Ataxia, meaning he experiences involuntary movements in his body.
Both boys, according to their mother, have limited speech ability due to their varying degrees of CP.
The Miller boys have undergone regular physical, occupational and speech therapies under the family’s insurance, but other treatments and therapies that have the potential to help them are not covered and therefore more difficult to come by. Miller and her husband subsequently launched a fundraising campaign through IndieGoGo in the hopes of raising money to help fund additional treatment for their sons. They garnered over $15,000 in donations over the course of a month, and have their sights set on a goal of $20,000.
"We are currently raising money to support a treatment for Carson called SPML," Miller told Opposing Views. "This procedure may enable Carson to walk without scissoring, have more ease when crawling (this is a quite uncomfortable and uncoordinated for him) and allow him to sit with ease without fighting himself to NOT fall over. We’ve just booked the procedure for September 8th in Texas and plan to go for the week so he has some time to recover. If insurance will not cover this, we will use the fundraiser to help with expenses, if we can get insurance to support us, the money will be used for post-op intensives to strengthen his new abilities. We are in process of getting Chase assessed to see if he is a good candidate for this same procedure. He too struggles with loss of balance and ease of walking independently."
"Right now we’re in our 3rd week of a Conductive Education (CE) intensive that helps the boys to learn the significance of slow, steady and intentional movements so they can gain more awareness of how their bodies work," Miller added. "CE does not use any strap down chairs, wheelchairs, standers, or other equipment that reinforces dependence. We want more than anything for our boys to become independent with their bodies thus we need them to believe that their bodies can support them. This is hard work for them (and us) but the results are worthy of the work! We will continue with a variety of therapies with an emphasis 2-3 week intensives to boost their strength."
On the fundraising page, Miller wrote that the services they've been able to get so far have helped motivate her young sons to continue working.
“We love Carson and Chase with everything we have, and that love, along with the support of their caregivers, teachers, therapists, and the special needs community, has given them a solid foundation and empowered them to keep trying,” the Millers wrote on the IndieGoGo page.
“Our hope is that they (and we) never, ever give up, and that we can instill in them (and us) that anything and everything is possible.”