MUMS National Parent to Parent Network had its first meeting on December 20, 1979 as a local support group for parents of children with Cerebral Palsy. As word of our group spread, parents of children with other conditions such as, Muscular Dystrophy and extremely rare conditions such as, Mucopolysaccharidosis Type I, Hurler Syndrome, asked if they could join us, as they had no such support groups. We opened our membership up to all parents of children with any disorder or medical condition. We kept track of parents by filling out index cards and kept them in recipe boxes. At meetings we discussed how alone and depressed we felt before we had each other to reach out to in times of need. One of the majors needs expressed by parents was to talk to others whose children had the very same or similar conditions. In order to match parents whose children had the same disorder, I had to go through the hundreds of index cards by hand until my daughter, Jessica, got a computer with a database program. A national, federally funded organization in South Carolina, The National Information and Referral System, found out about my "matching service" and started referring parents from all over the United States, thus expanding MUMS to a national focus.
MUMS main purpose is to provide support and information through a parent matching system. We also connect parents to support groups that cover their specific condition and assist in forming such groups. We changed our name from Mothers United for Moral Support, Inc. to MUMS National Parent-to-Parent Network to be more inclusive of the many fathers involved in our organization and to make our name more descriptive of what we are about. Eventually word spread to other countries of our unique matching service and MUMS became international. MUMS presently has over 19,000 members from 54 countries, perhaps one of the largest, if not the largest databases of children with disabilities or rare chromosomal conditions in the world. We exchange newsletters with many groups throughout the world.
In 1995 one of the newsletters from England, Linkhands, told of Linda Scotson and her son's improvements with Hyperbaric Oxygen treatments. Around this time we also received an anonymous packet of information about HBO treatments treating comas and strokes. Further issues of the English newsletters featured a little girl whose spine became reattached after a car accident and another boy with Cerebral Palsy improving with HBO.
Being very skeptical by nature, I hesitated to give false hope to myself or others, but could not ignore the potential of this treatment. I decided to share the information with a few select individuals to get their opinion whether or not I should mention it in the MUMS newsletter. A packet of all the information I had, was sent to two members of MUMS Professional Advisory board: Dr. David Dunn, a Pediatric Neurosurgeon in Milwaukee, Wisconsin and Dr. Mary Zupanc, a Pediatric Neurologist at Mayo Clinic in Minnesota, and five parents, three with children in comas and two with children with Cerebral Palsy.
To my amazement, the two parents with children with Cerebral Palsy, Laurel Kazik and Diane Roznowski were on their way to see Dr. Neubauer within 10 days of receiving the packet! Dr. Neubauer was the only doctor mentioned in the information we had and he had never treated children with Cerebral Palsy before, but was willing to treat the children. By coincidence, Dr. Philip James would be at Neubauers when the mothers arrived and assist with the protocol. The mothers could only afford 12 treatments each, but both daughters showed remarkable improvement.
When she returned home, armed with documented improvements, Laurel approached St. Elizabeth Hospital, in Appleton, Wisconsin, which is 20 miles from her home to ask them to continue treatments in their HBO facility. The decision went before the hospital's Ethic's Committee and Laurel was allowed 12 more treatments for her daughter. Frustrated with no place to go for follow-up and watching their daughters regress, Laurel and Diane proceeded to purchase their own chambers. Laurel did a fund-raiser and Diane's husband tried to build their own. Both mothers ended up filing for divorce, which greatly slowed down their efforts.
Dr. Dunn visited Dr. Neubauer and was impressed with what he saw. Kaylee's pediatrician and Home Health nurse both told me of the noticeable improvements in Kaylee and so I decided I could no longer keep this information to myself, but I owed other parents the opportunity to investigate it for themselves. In addition I had done searches on the Internet and received more information from other parents and had amassed quite a bit of information. I investigated and researched information about HBOT for 2 ½ years before publishing this information.
The impact of this information was more than I expected. Dr. Neubauer had to order 4 more chambers and could not keep up with the demand. Desperate parents tried finding HBO providers in their own areas and shared more resources and experiences with MUMS. Ninety ordered our growing HBO packets. Linda Scotson called from England excited we were spreading the word in the U.S. Her stories really convinced me I had made the right decision to share the information.
A letter to the editor from two parents in Exceptional Parent Magazine asked for more formation on HBO. I responded and the response with MUMS' address and phone numbers were published so more parents called and letters poured in. The letter I had responded to turned out to be from Claudine Nadeau from Quebec and Debbie Nardone from Illinois. They both ordered HBO packets from MUMS and made arrangements to go to England.
When Claudine brought her twin sons, Michel and Mattheau, back from England, Dr. Marois, was amazed at the improvements. Claudine and he approached McGill University in Quebec to do a study. The McGill study report has been published in the Undersea Hyperbaric Medical Society publication and has been copywrited so it cannot be distributed. The results were amazing considering the 25 children ages 3 to 8 years old with spastic diplegia Cerebral Palsy only got 20 treatments at 1.75 atmospheres. Results showed reduction in spasticity in hip adductors, hamstrings and ankle plantarflexors. Patellar tendon and Achilles tendon reflexes were found to be significantly reduced. It was reported that there was significant improvement for walking and sitting as well as for knee walking. The study concluded that HBO improves function in children with spastic diplegia. A double-blinded randomized follow-up study at 3 sites in Canada involving 130 children is almost finished.
The United States Food and Drug Administration (FDA) has not approved HBOT as a treatment for brain damage as yet. MUMS' and the many parent members involved in what has become the "HBO Movement" want this treatment approved so insurance and Medical Assistance (Medicaid) will cover it. We need funded studies to prove one way or another what effects HBOT has on the injured brain and to produce the proper protocol to maximize its effects. If the preliminary studies are any indications, HBOT will eventually become a treatment of first choice for brain damage and will be covered by insurance and Medical Assistance. Parents will then be able to go to safe hospitals and clinics and get medically supervised affordable treatments for their children. Hopefully this treatment will become a prevention rather that a healing technique.
Understandably parents are impatient with the present options and feel time is of the essence as reports of "the sooner the better " are voiced. Parents remain vulnerable and exploitable. One thing has changed though. Through the MUMS organization, we parents are connected and can share bad or good experiences. Together we are empowered with shared knowledge and thus are less vulnerable. With the speed of the Internet, providers that are not reputable are removed from the list minutes after they are placed when parents email complaints. Parents investigating clinics can be better informed as they are connected with parents who have tried those clinics. At first published prices began to rise, now with competition, prices are coming down. Nothing can stop this HBO movement. We only hope it can be made approved and safe before a disaster happens.