{"id":11745,"date":"2015-06-05T04:56:02","date_gmt":"2015-06-05T11:56:02","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?post_type=family-stories&p=11745"},"modified":"2025-12-30T04:57:45","modified_gmt":"2025-12-30T12:57:45","slug":"fitzpatrick-vassallo-family-message-hope","status":"publish","type":"family-stories","link":"https:\/\/myotonic.org\/fr\/family-stories\/fitzpatrick-vassallo-family-message-hope\/","title":{"rendered":"The Fitzpatrick-Vassallo Family: A Message of Hope"},"content":{"rendered":"
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John Fitzpatrick and Kristen Vassallo remember the day their twins, Jack and Ellie, were born with mixed emotions. Ellie was born wailing and thriving, but Jack was clearly in trouble. \u201cHe came out blue and not breathing,\u201d John recalls. \u201cThis was a surprise to the doctors and everyone there.\u201d<\/div>\n<\/div>\n
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The baby was resuscitated and then whisked off to a ten-day stay in the neonatal ICU, while doctors ran all kinds of tests and pondered what might be wrong with him. One night, unbeknownst to his parents, a pediatric geneticist examined Jack and ordered yet more tests. Four weeks later, long after a much-improved Jack had come home from the hospital, Kristen got a call from her pediatrician. The tests had revealed myotonic dystrophy\u00a0(DM).<\/p>\n

\u201cIt was probably the worst day of my life,\u201d Kristen recalls, \u201cgetting the diagnosis and then asking my pediatrician, \u2018Is this bad?\u2019 and having him respond, \u2018Yes, it\u2019s\u00a0bad.\u2019\u201d<\/p>\n

\u201cWe had no idea about this disease,\u201d Kristen recalls. \u201cWe did what I think most families do –\u00a0we got on the internet.\u201d This was back in 2005, before much information was available. (Myotonic was launched 2 years later, in 2007.) \u201cWhat we saw were horrible, horrible images of this disease,\u201d Kristen says, \u201cand we really had no understanding what we were dealing with.\u201d Within a few months, Kristen also tested positive for DM, while Ellie, Jack\u2019s twin, tested\u00a0negative.<\/p>\n

A decade later the professional couple from Austin, Texas, have learned a great deal about DM and are active in efforts to educate others about the disease. And the message they preach from their experience is one of hope. \u201cIf we were told when Jack was diagnosed that this was where he would be ten years later, we wouldn\u2019t have gone through the agony we experienced then,\u201d Kristen says. While their son does have symptoms of his disease –\u00a0weakness;\u00a0developmental, learning, and social issues;\u00a0some orthopedic problems\u00a0– his life has not been devastated as John and Kristen once thought it might\u00a0be.<\/p>\n

In fact, Jack is doing pretty well. \u201cAnd he is so loved,\u201d Kristen says. \u201cChildren just flock to him. It\u2019s the most amazing\u00a0thing.\u201d<\/p>\n

Ellie tells Kristen,\u00a0\u201cI\u2019m known as Jack\u2019s sister throughout the\u00a0school.\u201d<\/p>\n

A Special Relationship<\/h2>\n
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Early on after Jack was diagnosed, his pediatrician predicted that the boy\u2019s relationship with Ellie would be a boon to both children. \u201cIt will be good for him to have this unaffected, normal, high-achieving sibling, because he\u2019ll always have this high bar, to be just as good as his sister,\u201d Kristen recalls the doctor saying, \u201cand your daughter will be more compassionate and have a better sense of the way things can work out fairly and unfairly in the\u00a0world.\u201d<\/p>\n

Which has turned out to be true, Kristen says. \u201cIn my opinion, Jack would not be where he is now –\u00a0which is doing really wonderfully –\u00a0without Ellie. He\u2019s had to keep up with her his entire life. She was an early walker, and he needed to run after her, so he figured out how to walk. And Ellie cares deeply,\u00a0not only for her brother, but also for other children in the world. She sees differences in people as interesting and\u00a0special.\u201d<\/p>\n

Ellie is protective of Jack. Kristen recalls her daughter overhearing a conversation in which she and John were discussing a new drug trial for DM and how one day there might be a cure for the disease. \u201cWhat would that mean?\u201d Ellie piped up. \u201cI don’t want Jack to\u00a0change.\u201d<\/p>\n

\u201cThey\u2019re best friends,\u201d Kristen says her children, \u201cprobably more important to one another than John and I in many ways. We call them the old married couple. They fight like crazy and drive one another crazy, but they can’t live without each\u00a0other.\u201d<\/p>\n

Kristen and John try to keep in mind that while Jack has special needs because of his disease, he also has unique needs simply because he is Jack –\u00a0and that Ellie has her own needs. \u201cEllie has had her challenges,\u201d Kristen says, \u201cand while you might think they were minor compared to Jack\u2019s, they have been important to her. When they were babies we used to laugh that we had a special-needs\u00a0child and a high-needs child. Every child has different ways they need\u00a0you.\u201d<\/p>\n

Reaching Out Through\u00a0Myotonic<\/h2>\n

During the tumultuous time immediately following Jack\u2019s diagnosis, Kristen learned through her mom, Mollie McKool, that efforts were afoot to launch a DM foundation in the US. That work blossomed into Myotonic, and Kristen attended the organization\u2019s first\u00a0conference.<\/p>\n

\u201cMeeting people with the disease was in some ways very scary, but in other ways very powerful,\u201d Kristen recalls. \u201cAs a mom, you spend a lot of time asking, why did this happen? And you talk with these other moms and they are dealing with the exact same issues. John and I really believe in Myotonic. It\u2019s so powerful and so needed. Now it\u2019s a very hopeful experience every time we go to a conference. It\u2019s really\u00a0special\u201d<\/p>\n

John\u2019s involvement with Myotonic also began at a conference, where he felt the same power in connecting with fathers and husbands in DM families that Kristen had with the mothers.\u00a0After a few years as an Myotonic volunteer, he joined the\u00a0board of directors<\/a>, where he has put to work the skills learned in a lifetime as a teacher, educational administrator, and foundation director. He has been impressed by the organization\u2019s growth and its growing impact working toward Care and a Cure.\u00a0He points particularly to the myotonic\u2019s\u00a0Fund-a-Fellow program<\/a>, support for\u00a0research<\/a>,\u00a0conferences<\/a>, \u201cand all the different efforts to give families and people living with myotonic dystrophy better quality of\u00a0life.\u201d<\/p>\n

Back home in Austin, the couple reach out whenever they hear of a new area family affected by DM. Kristen connects with the moms, and John might invite a dad out for a beer, just to talk. Over the last few years, they\u2019ve bonded with several other families in town, include one with twins in which one twin is affected by DM –\u00a0an almost identical situation to their\u00a0own.<\/p>\n

Kristen is particularly focused on the unaffected siblings, like Ellie –\u00a0believing that they should have a way to connect and share experiences the same way mothers and fathers do. Looking ahead for their own kids, the couple\u2019s goal is for both Jack and Ellie to lead independent lives –\u00a0that Jack gets the support he needs to do that, and that Ellie is able to flower in her own life without feeling responsible for\u00a0Jack.<\/p>\n

\u201cWe want our message to be one of hope,\u201d John says. \u201cWith the kids turning ten, this is the anniversary of that first really hard year. We\u2019ve been so much more successful –\u00a0Jack has been so much more successful –\u00a0than we could have imagined. We’re hopeful for the future and so appreciative for all the friends and families and doctors that have helped us along the way. There really is a way to fight through this disease –\u00a0to have a great family and a great life and make everything\u00a0work.\u201d<\/p>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"featured_media":11746,"template":"","class_list":["post-11745","family-stories","type-family-stories","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/family-stories\/11745","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/family-stories"}],"about":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/types\/family-stories"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/media\/11746"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/media?parent=11745"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}