Many have wondered what exactly Cerebral Palsy is or how if affects Maggie and I discussed that here. Since we started fundraising just over a year ago, people have not understood our reasons for seeking therapy in Canada. Nobody has asked us directly, but others campaigning on our behalf have been asked, “why do they have to go to Canada? There have to be programs here that insurance will cover.” And it’s a fair question. One that many others have probably thought but didn’t ask. There are programs here that insurance covers- and the state covered what insurance didn’t pay for under the Early Intervention system which Maggie aged out of at three. Maggie has benefitted from these programs and she’s been blessed with wonderful therapists who are knowledgeable, passionate about their work and love our little girl. But Natan’s LIFE program has a completely different approach.
The cliff’s notes version: going to Canada is the difference between walking and a wheelchair, between more independence and less. Feel free to read on if you like more detail. 🙂
So how is the LIFE program different? Natan has implemented a holistic approach- the body works together- each part is it’s own function, yes, but they all work together. You must lead the body into a healthy state and as such he stresses the importance of good nutrition so improvement can take place from the inside out. The proper separation of movement cannot happen without proper stimulation and function of organs and blood supply to the brain. Separation of movement means when we want to grab a cup of water and drink it, we reach out our arm, grab the cup with our hand, bring it to our mouth for a drink then set it back down. For Maggie, her whole body moves because she’s trying to pull together everything she has to complete this task. So when we say her movements are smoother, this is a big thing- it’s a little thing to us because we don’t have to think about it or work for it- but it’s a big thing for her. Proper stimulation and function of organs and blood supply to the brain means when we’re not moving, the blood flow- circulation- decreases and not as many nutrients are exchanged. The brain needs this nutrient exchange to grow and develop. This is why people in hospital beds for prolonged periods can experience muscle atrophy- they’re not moving. It’s the same with Maggie and other kids like her, when they’re not moving certain body parts, their blood supply decreases.
All this sounds nice, but how does that really relate to Maggie’s therapy? You read in the last post how CP affects Maggie. Well, our brain has neural pathways that connect one part of our nervous system to another and consists of many neurons collectively known as white matter. At Maggie’s first Neurologist visit we were told her white matter was damaged in utero. These pathways deliver information to our body; an analogy I use for Maggie’s big brother is a bridge- if it’s broken, the connection from one side to another CAN happen, but you have to go around- the long way if you will. Our brain can form new neural pathways- called neuroplasticity, which allows these neurons to make connections with undamaged nerves to complete a function. Basically, the brain finds another way to the other side of the bridge, it just needs the opportunity. Guess how this happens? Through activity. The pathways must be correctly stimulated through activity.
Enter LIFE program at Health in Motion. Everything Natan does with Maggie is based on stimulating the body, the blood supply and therefore the brain through rotation- this pumps that blood and increases that circulation, as we discussed- to deliver nutrients to the brain and allow for neuroplasticity. She rotates as she rolls, from lying down to sitting up (see pics here), then moves side to side to grab a ball then turns her head, trunk and legs to transition to her knees. This overexaggerated movement activates her brain and teaches her to do the move- same reason Natan (and we) use verbal cues while guiding her movements- the repetition of the words alongside each movement creates recall in her brain. She needs physical and verbal guidance for many functions but eventually she’ll only need verbal then nothing at all. He approaches therapy in an active way- that equipment is passive, it’s doing the work for you- but when she does it herself, her brain is actively engaged, learning that it can do this movement because the proper stimulation is re-connecting the pathways. It’s not a fast process re-building a bridge or going around the long way. It takes time, a lot of work, a lot of patience, but it can happen. That’s why each time we go it builds on the last and steadily Maggie is improving and becoming more independent. Even the little things are big for her. And it works. Not only have I seen improvements in Maggie, but met families whose children are walking, talking, crawling and overall more functional than before their trip(s) to HIM. Natan has never promised Maggie will walk, but he thinks it’s possible with visits and continuing the LIFE program at home. And so do we.
So why not just accept her in a wheelchair with limited mobility and self-help skills (eating, bathing, etc.)? Of course we love Maggie no matter what but if she can walk and be independent in other ways, why not try? If we did get a wheelchair for Maggie now, it wouldn’t be her one and only. She would need to be re-fitted every few years as she grew, we would need handicap access in our car and at home plus other equipment to assist with hygeine as she gets older and bigger. The CDC estimates the lifetime cost to care for someone with CP is nearly $1 million (cdc.gov). We are currently working to raise at least $30,000 by April and if we succeed, that will bring our fundraising total to about $60,000. I don’t know how many more trips we’ll need but I met a couple who moved from Ireland to Toronto for over a year with their son after raising about $130,000 (US dollars) and they are no longer making trips. He is independent. Other patients have given testimonies of similar success and no longer need HIM’s services, but I personally met the family to which I’m referring. So even looking at it from an economic standpoint, HIM is a great place to be. This may not be the same for Maggie, but it’s a strong comparison. And according to the CDC, over half the children with CP can walk independently, though the statistics don’t quantify the degree to which the children were affected by CP. There’s a large spectrum. But traditional therapy wasn’t working for Maggie- her trunk was not improving enough for her to walk.
Again, our therapists here have been great. It’s not like they want Maggie in a wheelchair. But they were guiding us in that direction because in their experience that’s what she would need. LIFE is guiding us away from that. Natan and the program he created has a completely different view– nothing can be built up on a disability and you can learn independence through proper nutrition and actively engaging the brain throughout the therapy process to ultimately achieve independent function.
This is Maggie’s chance. And that’s why we go to Canada.