Mary Hickmott – Hope for NKH Treasurer

My 6-year-old son Jonathan has NKH. He was diagnosed at 14 days old. At the time he was diagnosed my husband (of 13years) and I decided to remove ventilator support and waited for him to stop breathing.  However, God decided to give us a miracle and Jonathan started and continued to breathe on his own.  We were told several times that he would eventually go into a deep sleep and stop breathing.  But after three days he continued to breathe on his own and we were sent home from the NICU on hospice.  My husband and I along with our families took turns holding Jonathan 24 hours a day because we did not want him to die alone and at times he did very poorly but always recovered his breathing on his own and eventually seemed to be doing much better.  We found the parent support site NKH International Family Support Network (www.nkh-network.org) and was told that there was hope for children like Jonathan. He was being feed by a tube through his nose and kept pulling it out.  It became a concern that he might aspirate so we contacted the doctors and we asked them about some medications that we had learned of on the parent support website.  The doctors agreed to try the medications and schedule placing a g-tube.  Jonathan has had to struggle with a lot of seizures and has had many difficult periods throughout his short life so far.  But he is such a fighter.  My husband and I promised ourselves long ago that as long as he choose to fight we would be right there beside him.  If only I had his strength.  He will always be our beautiful, sweet little boy and we can never love him as much as he deserves and our reality for as long as we would like. 

In life before Jonathan…. I worked from 1998-2000 as a Manufacturing Reporting Specialist for a nationwide drainage tile company.  The course of my duties were to schedule production, perform cycle counts, order stock and manufacturing supplies, schedule/ moderate/ participate in plant and national meetings, perform yearly inventory counts, handle special orders and act as back up dispatcher for our plant.   I was team leader of our nationwide Best Practices team.   From 1989-1998 I was employed as a Buyer and Marketing Manager for a paper and plastics recycling company.  During my course of employment I formulated accounting practices month-end through year-end cycles, bought/sold commodities and manufacturing supplies, designed advertisements, scheduled transportation of products, created an inventory database and practices, overseen office and plant management staff.  Though all these things I did seemed like a lifetime ago after Jonathan was born I still missed working outside the home and the business challenges.  I had never pictured myself as a stay-at-home mom not that it is a bad thing but that I thought I personally would always work outside the home at least part-time.  But with the many doctors appointments and hospital stays not to mention medication schedule it just hasn’t been possible.  So when the NKH International Family Support Network asked for volunteers to help form a nonprofit I felt this was a way that I could fulfill some of my needs along with honoring my dear son’s struggle.  In addition, it is so painful to see all the new families just starting out on their journey’s I think I have cried every time I have read of about another child being diagnosed and all the challenges they and their families have to face.  I feel so frustrated and always wish there was something more I could do… I hope that by volunteering as a director on Hope for NKH that we can move forward toward finding new treatments, more support, or just bring more awareness to this devastating disorder.