Hopelink provides services for children with rare disorders

Hopelink provides services for children with rare disorders

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Updated: 11:28 AM CDT May 18, 2017


A local group is providing life changing services for families who have kids with rare disorders. It’s called Hopelink. A mother told KOCO 5 that this group has been an absolute blessing to her family, and now she’s teaming up with them to help raise money.

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WEBVTT YOU T FIRSTALERT AND IT’S NOW 9:51 A.M. SOLET’S SEND IT OVER TO RUSSELLJONES.RUSSELL A LOCAL GROUP ISPROVIDING LIFE-SAVING SERVICESFOR PEOPLE WITH DISABILITIES.THIS GROUP HAS BEEN AN ABSOLUTEBLESSING IN ONE WOMAN’S FAMILY.LAURA IS WITH ME.HOW ARE YOU DOING?>> I AM DOING WELL AND THANKSFOR HAVING US.>> HOW IS EVAN DOING?>> HE IS DOING GREAT.HE IS SNOOZING AWAY.YOU FOUND OUT AFTER YOUR SONWAS BORN THAT HE HAD A RAREDISEASE.>> EVAN HAS A TERMINAL RAREGENETIC DISORDER CALLED MENKES.WHEN WE GOT DIAGNOSED AT SIXMONTHS, HE HAD SEIZURES.WE WERE LUCKY BECAUSE MOST TIMESPEOPLE WHO HAVE THIS DISORDERFINDS OUT AFTER THINGS HAVEHAPPENED.WE WERE BLESSED TO AT LEAST HAVEAN ANSWER BEFORE ALL THISSTARTED.>> I CAN IMAGINE THAT AT HOPELINK, YOU GRAVITATED TOWARD THEMBECAUSE THE STRUGGLES ARE TOUGHAND THEY HELP WITH THAT?>> HOPE LINK IS A BUNCH OF MOMSLIKE ME WHO HAVE KIDS WITHSPECIAL NEEDS.I FOUND OUT FROM A GIRLFRIEND OFMINE.OUR FIRST HOSPITAL STAY WASMAYBE A WEEK AFTER THE DIAGNOSISAND THEN I REACHED OUT AND ASKEDWHAT THEY WERE.OUT OF EVERYTHING WE WERE GOINGTHROUGH, THERE’S NO WAY I AM THEONLY PERSON.>> YOU DID NOT KNOW WHAT HOPELINK WAS BUT YOU DID NOT KNOWANYTHING ABOUT RARE DISEASESEITHER.YOU HAVE BECOME AN EXPERT.>> HOPE LINK HAS BEEN AWESOME.THE MOMS GIVE GUIDANCE ON WHATTHEY HAVE GONE THROUGH AND MANYPEOPLE ARE STARTING THEIRJOURNEY OR THEIR CHILDREN HAVEALREADY PASSED THROUGH SO THEYKNOW ABOUT THE MEDICAL PART OFIT AND THE…

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