AMY SULLIVAN
Girl contracted encephalitis at one month old
Suzy Sullivan attends school with her daughter Amy to monitor seizures and hypothermia episodes. Amy contracted encephalitis when she was one month old.
By LESLIE GRAY STREETER
Palm Beach Post Staff Writer
Susie Sullivan knows daughter Amy’s every laugh, her every smile. But some mysteries Amy’s sweet face holds are frustratingly elusive.
“I just want her to be able to tell me when she’s hungry, when she hurts,” Sullivan says, wiping away tears. “I realized the other night — that child does not cry wet tears. She laughs. But she never, never cries. I cry enough for both of us.”
In the first month of her seven years on this earth, Amy contracted encephalitis, an infection that left the previously healthy baby’s brain severely damaged. She cannot speak, feed herself, or go to the bathroom by herself.
For a while things got better. With the help of her physical therapists and teachers at Potentials Charter School, on the campus of the Arc of Palm Beach County, she flourished to the point where she was able to take a few wobbly but determined steps.
“She’d take off across the room,” her mother remembers.
Amy is kept warm during a hypothermia episode while at school.
But now, a series of seizures that wrack her tiny body sometimes up to 200 times a day leave her confined to her wheelchair. And though her mother can comfort her, there is little she can do to stop them.
“She’s developed a resistance to the medication,” says Sullivan, who suffers from health issues of her own, having had three gastrointestinal surgeries.
In March, things got even worse, when Amy was taken by helicopter to Miami Children’s Hospital to treat hypothermia, a drop in her body temperature and heart rate to life-threatening levels. These episodes now happen daily.
The costs of her extensive medical bills are added to her family’s other struggles: Father Christopher lost his landscaping job. Susie spends every day that Amy is well enough to attend school volunteering there. And 15-year-old brother Grant, who has ADHD, also requires a lot of energy.
“I’m so tired,” Susie says, not for the first time.
Physical therapist Mary Pengelley says that’s because the Sullivans work so hard. “They’ve faced a series of unbelievably unfortunate events, but they don’t give up in the face of it,” she says. “For every trial, every trauma, they regroup.”
AMY’S WISH
Amy’s father, who lost his longtime job and only recently found a new one, and her mother, who has had three gastrointestinal surgeries, are struggling with crushing medical bills (just one of Amy’s medications costs $2,000 a month) as well as household costs. The family needs a disabled-accessible van, a portable Hoyer Lift with Cradle Sling, a Pediatric Bath Trax Transfer Bathing System, a Snug Seat Pilot adaptive car seat, a Convaid Cruiser adaptive stroller, a custom wheelchair and ankle-foot and trunk orthosis. A touch-screen computer or an iPad would allow Amy to communicate with her parents via special apps.
NOMINATED BY: The Arc of Palm Beach County
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gethefax on 27 Nov 2011 at 9:42 am #
It’s amazing this family is enduring the struggles. Not everyone could handle this lifestyle. It seems they are taking it day by day. My heart and prays go out to them as well for a miracle recovery from all their problems and trials, that God would heal their daughter and/or bring them comfort and peace during through theses trails, In Christ Jesus Name and by the power of His Holy Spirit…Amen
Michele on 27 Nov 2011 at 8:29 pm #
I have the unquestionable pleasure of knowing the Sullivan’s personally. As my neighbor, I watched the joy of having a child turn into the ultimate sacrifice for this entire family. I would never be able to handle the trials that these beautiful people have endured, with each of them suffering in their own way. Few of us would. Many marriages would not survive the stress of this kind of life. Many people would ask “why me”? These are the kind of people that do not ask that question. They just care for one another lovingly with strength and dignity. They keep their sense of humor and their spirit of healing to share with others as needed. I can’t describe the admiration and love I have for these four amazing people. My wish for them is to have a lighter burden. I pray that this Palm Beach Post recognition does that in every way possible. There are no more deserving human beings than these!
Erica on 05 Dec 2011 at 4:28 pm #
I am doing a report on this at my school…
taylor on 05 Dec 2011 at 5:00 pm #
omg. i love your storie. i feal sooo bad for her, but atleast she is in good hands and if this is the way god planned her life to be then she is perfect just the way she is.
godbless her little heart.
Owen O'Neill on 06 Dec 2011 at 10:46 am #
Clinics Can Help would be happy to donate a Hoyer Lift to this family. We can be contacted at (561) 640-2995.
taylor on 07 Dec 2011 at 3:13 pm #
amy, iam diong a report on you at school. iam making a story and a flyer about you and to raise money for you.
Scott on 07 Dec 2011 at 6:06 pm #
Our thoughts and prayers go out to this family.
Ellen on 11 Dec 2011 at 12:58 pm #
As a mother of three “healthy” girls, I have so much respect and admiration for Susie Sullivan and her husband. I wish them the strength and love to continue to live in such a giving, committed way. Many prayers for improved health for Amy. God bless you all.
john on 19 Dec 2011 at 3:11 pm #
amy’s parents need to be given the medals of honor, courage n fortitude. I can’t even imagine what the family n little amy must go thru daily, such things that most of us take for granted. I pray that the Lord Our God put His healing hands upon their whole family, and that they can find some relief,support, and guidance . So that at the end of every day, there can be heartfilled pleasure and smiles within amy. Dear Lord,JESUS,heal what u can, help with what they can’t, and give them all of what they need. I say n pray all such in JESUS’S name, AMEN.