{"id":11727,"date":"2015-09-03T04:45:09","date_gmt":"2015-09-03T11:45:09","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?post_type=family-stories&p=11727"},"modified":"2025-12-30T04:46:55","modified_gmt":"2025-12-30T12:46:55","slug":"kiryakoza-family","status":"publish","type":"family-stories","link":"https:\/\/myotonic.org\/es\/family-stories\/kiryakoza-family\/","title":{"rendered":"The Kiryakoza Family"},"content":{"rendered":"
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Special Attention Helps a Son With DM<\/h2>\n<\/div>\n
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Steven and Hamsa Kiryakoza first heard of myotonic dystrophy (DM) from a doctor who asked to shake Hamsa\u2019s hand in November 2007. Six weeks earlier, Hamsa had delivered the couple\u2019s first child, Steve, at a community hospital near their home in Farmington Hills, Michigan. Born not breathing and unable to move on his own, Steve was quickly transferred to University of Michigan Hospital for full-body cooling, a treatment to prevent any long term injury due to potentially having reduced oxygen to his brain during birth, then back to the ICU at the community hospital, while the doctors continued to puzzle out what might be wrong with him.<\/p>\n

Through this entire six-week period, the couple was at Steve\u2019s bedside 12 to 16 hours every day. So when one of the ICU doctors showed up and pointedly asked to shake Hamsa\u2019s hand, her first thought was that they were being congratulated on their caring and diligence. Hamsa was just puzzled. \u201cFirst he asked to shake my hand, and then he said, \u2018Let go\u2019 –\u00a0and I couldn\u2019t let go,\u201d she recalls.<\/p>\n

\u201cOk,\u201d the doctor said. \u201cWe need to get him checked out, but I\u2019m almost positive he has myotonic dystrophy,\u201d explaining that the inability to release a grip (myotonia) was a common symptom of a genetically inherited form of muscular dystrophy that she might have passed to her son.<\/p>\n

Two weeks later, another doctor showed up to confirm the diagnosis and to confess that she really didn’t know very much about DM. \u201cShe handed us a bunch of printouts from the NIH and the hospital and told us she\u2019d put us in touch with a neurologist,\u201d Steven recalls. A week later, with Steve finally strong enough to make it outside the hospital, the young family went home.<\/p>\n

Looking for Information<\/h2>\n
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Following Steve\u2019s diagnosis, Steven dove deeply into the internet in search of information about DM. \u201cI spent what must have been weeks on the computer,\u201d he recalls, \u201cjust reading about the condition, reading other family’s stories.\u201d Among the contacts he found online was Lisa Harvey, the former executive director of Myotonic. \u201cHer daughter is a little older than Steve,\u201d Steven says, \u201cand I learned a lot from what she told me about her experiences. Hamsa and I were just trying to learn as much as we could.\u201d<\/p>\n

Today, Steve\u2019s care is coordinated at the University of Michigan. He sees specialists in neurology, cardiology, and physical medicine and rehabilitation. He also sees a nutritionist and is monitored by a sleep apnea specialist. At seven years old, Steve is doing so well that he visits most of these doctors only once a year. \u201cWe’ve seen Steve get bigger, stronger, and improve with very few setbacks, and we’ve been extremely thankful for that,\u201d Steven says.<\/p>\n

But Steve does require special care and attention. For example, he is nonverbal, not toilet trained, and doesn\u2019t eat by mouth, symptoms that qualify him for the local school district\u2019s program for students with severe multiple impairments –\u00a0special schooling for which the Kiryakozas are grateful. The eight students in Steve\u2019s classroom benefit from the attention of a teacher, a nurse, and two instructional aides. During the school year, Steve spends some time each day in a mainstream classroom, and in summer, he continues to attend school four days a week \u201cThat consistency helps him keep progressing,\u201d Steven says. \u201cWe\u2019ve seen a good return on that.\u201d<\/p>\n

While Steve doesn’t speak, he does find ways to communicate. \u201cHe absolutely understands everything we tell him,\u201d Steven says. He knows his name and is receptive when we ask him to do things.\u201d At school Steve has been learning to use a Picture Exchange Communication System (PECS) board to communicate by pointing to images organized in various categories on the board. \u201cHe does phenomenal with that at school. We’re just amazed at the level he\u2019s able to communicate.\u201d<\/p>\n

Now the school is working on getting Steve an electronic version of the system –\u00a0basically an iPad with an interactive communication board built into it. The teachers have been testing this with Steve, and Steven and Hamsa are optimistic that he will do well with it because he loves technology and already uses an electronic tablet for playing games and watching YouTube videos. \u201cWe feel that the added level of technology to help with his communication is going to be a really big benefit for him,\u201d Steven says.<\/p>\n

A Sister for Steve<\/h2>\n

In 2011, Hamsa gave birth to a daughter, Elizabeth, via in vitro fertilization of an embryo screened for DM. \u201cSteve and Elizabeth act like any other brothers and sisters,\u201d Hamsa says. \u201cThey love each other, they fight with each other, they scream and yell at each other. But they adapt very well to each other as well. And Elizabeth is defensive of Steve. Her attitude is, don’t mess with my brother.\u201d<\/p>\n

While Steven and Hamsa have been pleased to watch Elizabeth hit her developmental milestones, it\u2019s also been hard for them to avoid comparing her to Steve. \u201cSince Steve was the first born, I really didn’t have a perspective on how he should be developing,\u201d Steven says. \u201cNow I see our daughter and everything she’s able to do much more quickly –\u00a0things our son may never be able to do. It’s our hope that there’ll be a cure for this disease. But right now, it\u2019s hard to see our daughter do all these things that our son can’t do.\u201d<\/p>\n

Another challenge for Hamsa and Steven is the difficulty Steve has adjusting to new situations,\u00a0particularly loud environments, where he may bury his face in a parental shoulder and cry. They\u2019ve tried to take Steve to a baseball game and a hockey game –\u00a0sports he likes to watch on TV –\u00a0but in both instances, \u201cit was horrible for him,\u201d Steven says. They hesitate to travel by air, because they know how difficult it is for Steve to fly.<\/p>\n

And, of course, they have to plan for their son\u2019s special needs around feedings and toileting.<\/p>\n

\u201cWe have to assess every situation and ask, ‘How is our son going to do?\u00a0How is he going to fit in?’\u201d Steven says. \u201cYou can’t just decide you’re going to do something and do it tomorrow.\u201d<\/p>\n

Off to Camp<\/h2>\n
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It was with some uneasiness that last year Steven and Hamsa signed their son up to attend an MDA summer camp about 100 miles from their home. They knew the camp would provide a high degree of personalized\u00a0attention for Steve, but they were concerned enough about his ability to adjust that they stayed in a nearby hotel in case they needed to\u00a0pick him up. Sure enough, on the second day they did get a call –\u00a0but only to assure them that Steve was loving camp life, climbing trees and riding horses.<\/p>\n

It was a watershed moment, Steven recalls. \u201cThat he could spend a week doing things that any other kid would do –\u00a0that really put huge smiles on our faces. It was one time that it really didn’t matter that he was different. He was allowed to be a child.\u201d<\/p>\n

Hamsa agrees: \u201cWhen they called and said that he was having a great time, it was a weight off my mind knowing that he could be away from me and not be afraid.\u201d<\/p>\n

If Steve does well at camp again this year, Steven and Hamsa say, then maybe next year they will consider a trip away with Elizabeth while Steve is at camp, perhaps to Disneyland or somewhere else it would be hard for Steve to visit. \u201cWe want to be sure we’re not limiting our daughter because our son can’t do some of these things,\u201d Steven says. \u201cWe\u2019re trying to find the right balance to allow each of them to be able to do things that other children want to do.\u201d<\/p>\n

Speaking Out for DM Support<\/h2>\n
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These days, Steven and Hamsa spend a lot of time sharing what they\u2019ve learned about DM and raising support for DM causes and research. They established a local DM support group and tell their story to a variety of groups, including firefighters and postal carriers. \u201cWe\u2019re just trying to get our story out there,\u201d Steven says. \u201cThe disease can be pretty abstract to people until they hear a family actually talk about their experiences. This brings home to them the reality of the disease –\u00a0hearing from someone in their community who is affected.\u201d<\/p>\n

The family is also active in Myotonic activities, especially the\u00a0Myotonic Annual Conference<\/a>. \u201cWe go every year,\u201d says Steven. \u201cIt\u2019s almost like a mini-reunion for us. We meet a lot of the families we\u2019ve talked with over the years and get caught up on what\u2019s happened over the last 12 months. We’ve got Facebook and other social media, so we do stay in touch regularly online, but that’s not the same as actually talking to people face to face. Then on top of that, hearing from the researchers and experts and learning about potential therapies –\u00a0it all makes these conferences invaluable to the community.\u201d<\/p>\n

The couple is particularly grateful that the\u00a02014 and 2015\u00a0Myotonic\u00a0Annual Conferences, both held in Washington, DC, provided an opportunity to make the case for DM funding to legislators.\u00a0\u201cLegislators need to realize that there are people in their communities that are affected by this disease,\u201d Steven says, \u201cand that we need funding to help find treatments.\u201d<\/p>\n

Steven and Hamsa hope that research may ultimately lead to treatments that will help Steve, but until that happens, they are trying to give him as much of a normal childhood as possible. \u201cI don’t want him labeled a disabled child, because he\u2019s not,\u201d Hamsa says. \u201cTo me he’s not. To me he’s just a normal little boy with a few issues.\u201d<\/p>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"featured_media":11728,"template":"","class_list":["post-11727","family-stories","type-family-stories","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/family-stories\/11727","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/family-stories"}],"about":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/types\/family-stories"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/media\/11728"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/media?parent=11727"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}