The Clara Shipp Story
Clara Shipp is five and a half years old.
She is fighting a rare disease that no one understands. She needs a feeding tube, 7 machines that keep her alive, and no one knows her prognosis.
She’s a miracle. She’s a fighter.
And, she’s a happy smackah.
She jumps on couch cushions, and pushes her babies around in a stroller. One day, she wants to be a doctor who gets to come home to her babies. One that doesn’t spend their lives in a hospital.
Her parents, Jennifer Goerlitz and Andrea Shipp, knew something was wrong when Clara didn’t move during pregnancy, as their son Ethan had. They knew something was wrong when she didn’t hit the expected milestones. They knew something was wrong for months, but all of the tests indicated she was fine.
Months and years went by with increasingly traumatic medical events: no weight gain, seizures starting before she was one, regular hospitalizations, needing life support after a simple cold, needing a permanent feeding tube because she aspirates everything. And still, no tests showing anything wrong.
And all of this time, Clara is fighting. In her daily life, Clara is dependent upon 7 machines to keep her alive. She’s on a feeding tube, nightly ventilator, a device that helps her push out and and suck in to make her cough. Those are just a few of the needed routines to keep her alive. And now, because they have all of these machines at home, Clara can usually come home from her emergency hospital visits sooner. Andrea, Jennifer, and Ethan are the medical pros, and Clara seems to be maintaining and moving forward.
All of this time, her older brother Ethan, three chronological years older but seemingly centuries older than all of us, watching out for his sister and noting every last detail of all that she endures and all that everyone does to take c
are of her. Ethan knows his sister’s schedule down to the hours of her daily feeding. More significantly, he seems to be her angel. In 2016, when she went into cardiac arrest, she was at Children’s Hospital, her life in the balance, for days. Hope seemed hopeless. Ethan asked to go see her. He spoke to her, and she moved for the first time in days, and her functions returned to normal within hours. She rebounded to everyone’s astonishment.
Last summer, they finally got to go to the National Institute of Health in Bethesda, and they did get a few answers. Clara has a rare disease, and it is limited to her. She has “congenital myopathy” which is under the umbrella of muscular dystrophy. Clara has facial neuropathy and starting at her deltoids, a myopathy. This is unheard of and why her disease is considered rare. They think that this is all new genes. Unheard of, not understood.
All of this time, her parents have lived on the edge, wondering what comes next. Andrea and Jennifer do not dare to hope too much, but Clara has been progressing for the past year, thanks to all of her dedicated medical support. They cite the relief they have in the systems that are in place for Clara. Longmont Hospital, the fire department, Children’s Hospital, all have protocols for Clara. And smiles and hugs for the entire family.
Through all of this, Clara is making strides. She zooms around, hurling herself like an Olympic athlete into the Ottoman, feeding her doll-babies and setting them up in their strollers, feeding them and holding them. And Clara is not shy to interject her thoughts in conversations. Unable to eat at all, she brings her own “lunch,” empty containers, to her preschool, joining in with others, eating whatever her creative mind conjures for the day.
When asked how they make it through each day, the answer is two-part. One, is, it’s the only life they know. But the second part is bigger, and their gratitude and humility shine through on this. They have a family and support network that is huge. A family that is never ending, from the sister who gets to their hous
e faster than the responsive fire department, to the parents and grandparents who organize their tag teaming of hospital drives, stays, and making sure that the home is still a home for brother Ethan. They know they could not do this without their huge family support.
And now we, at the Happy Smackah Family, are humbled to join their family.
We are proud to support Clara Shipp as the 2018 Happy Smackah. We thank you for your help and support in any way that you are capable – by participating in our Happy Smackah 5k Fun Run on May 12th, through a General donation, or by Volunteering.