Kaitlin Bolton and her mother Susan at their family home in Orangeville. Photo/LINDSEY PAPP “She wakes up and breathes, why won’t OHIP care for her?”

The sort of low chair that sits on the floor and normally might hold a baby, provides a comfortable place of repose for Kaitlin Bolton.

Kaitlin is 15 years old and the victim of MLD. Her hands and feet are curled with total inactivity. She has very little vocal sound but her eyes are attentive, with the light of comprehension. She moves almost constantly, but fluidly, not in spasms or jerks.

Metachromatic Leukodystrophy (MLD), the most common form of Leukodystrophy, is a rare inherited neurometabolic disorder affecting the white matter of the brain, a neuro-chemical disease which gradually causes the myelin sheath that coats the brain to degenerate. Life expectancy after diagnosis is three to five years. Not only is there no cure, and little or no research, there is also no treatment known or offered by conventional medicine.

In the article I wrote last year about Kaitlin, I explained her condition and circumstances:

“In other words ... conventional medicine has nothing to offer for it. However, OHIP will not pay for alternative treatment, even in the case where the alternative is clearly extending and even improving the life of the patient. In addition, there is no financial assistance given to the family by OHIP for coping with a person with MLD if that family is seeking help in the fields of alternative medicine.

“So, the family have a choice: staying with the conventional medical care (which amounts literally to nothing except for palliative care) and receiving benefits from the system in the way of financial assistance, or looking out for alternatives which might in some way retard the progress of the disease or even reverse it while getting no financial help from OHIP.

“Thus it is with Orangeville’s Bolton family. Kaitlin was diagnosed with MLD at the age of seven and has lived much longer already than the prognosis anticipates. The Boltons attribute her continued life to the alternative medical treatment she is receiving from Dr. Randal Thomason in Arizona.

“Although Dr. Thomason contributes his time and expertise to the Boltons, they must pay for the medication Kaitlin is given intravenously at the hospital in Guelph every month. OHIP does pay for the facilities and the administration of the medication at the hospital.

“While Kaitlin’s condition and her mental agility are remarkable, given her circumstances, the financial burden for the Boltons is a heavy one. Over the years, the community has contributed one way or another, but, meanwhile, the Bolton debt-load is ever on the increase.”

When I went to visit the Boltons recently, I asked Kaitlin’s mother, Susan, what SPO RTS she wa nte d to sa y ab out the situation. I wanted her story. The Boltons are very frustrated that OHIP refuses to support them in their fight to keep their child alive and reasonably well. They are acquainted with other families whose children suffer from MLD but who have accepted the guidance conventional medicine has offered, which, keep in mind, is only the palliative care of a person being left to die. One family they know had three children, two of whom have died. The third now has a feeding tube so that she no longer has the chance to chew and swallow.

Said Susan Bolton, “Sick Kids [hospital] wanted me to let them put a feeding tube into Kaitlin as well, and I said no. Eating is the last thing she has left and I won’t take that from her. She just has what we have. It may take her two hours to eat her breakfast, but it’s worth it to me. As long as she can put food in her mouth and swallow, I’m going to let her do it.”

Mrs. Bolton went on to say, “She gets up in the morning and she breathes and understands. Why shouldn’t the system take care of her like any other citizen?

“When we needed a wheel chair, we had to go through funding. An occupational therapist came from the CCAC to measure her for a chair but we got it through Easter Seal. If they hadn’t had the money, we would have had to pay for it. That’s not the way it should be. If she needed a chair, OHIP should have paid for it.”

As if to make her point more clearly, she added, “If we were willing to just let her die, OHIP would help us.”

Cynically, one might observe that no one makes any money on Kaitlin’s alternative route. There are no drugs, no benefit for the pharmaceutical companies, no commission to doctors.

Kaitlin’s alternative treatment comes through an administration of vitamins and minerals prescribed by Randal Thomason which are adminis- tered intravenously. Mrs. Bolton has to go to a pharmacy in Toronto to pick up the prescription and deliver it to the hospital in Guelph.

To support the Bolton family, the local order of the Knights of Columbus sponsoring a charity Motorcycle Ride to raise money, on Sunday, September 12. Participating bikers of all ages and ilk will register for $25 at The Deck Pub on Mill Street, from 8:30 a.m. to 10 a.m. There are prizes and it is a poker run, with a winning hand of $750.

The ride is to support the Kaitlin Bolton Sunshine Fund and other local charities. Boston Pizza restaurant has agreed to hang a banner on their building advertising the run. For more information and to donate: www.kofc8851.com.

As Mrs. Bolton and I chatted, I watched Kaitlin in her chair. The glow of the day shone through the closed curtains, bathing Kaitlin’s pale skin in light. She stretched and yawned and looked at us.

With permission, I went over to her and, sitting on the floor beside her, touched her hand. I asked her something and she blinked at me in answer – her only remaining form of communication, her signal that she understands, that she is cognitive.

With a shock, I realized how beautiful she is, how loved and how treasured.

And here is the question: if OHIP will pay the way to a person’s dying, why does it not pay for a person to live?