As a friend who loves them, I have often felt at a loss for how to help, beyond just bearing witness to their struggles and triumphs, and providing the occasional dumpling delivery during one of their lengthy hospital stays. Anyone who spends a brief visit with this family will witness the love and hard work that Ari and Pat devote daily to helping Calliope live her very best life. One way I know we can help is by giving them some much needed financial support to enable them to continue to do exactly that.
Please take a few minutes to read Ari’s message below about how you can help. All donations will go directly to Ari and Pat's account. Your support of any amount is valuable and will be greatly appreciated, as will your help in spreading the word by sharing this campaign! Thank you. - Jennifer
------------- The following is from Ariana, Calliope's Mom ----------------
Officially, she doesn’t walk or talk or do anything without assistance, but in the real world beyond bureaucratic descriptions, she’s an impish six-year old who loves horseback riding, dancing, lasagna, and putting one over on her grandfather.
When Calliope was born here in NYC, she was diagnosed with a rare genetic disorder called Sturge Weber Syndrome. My husband (and college sweetheart) Pat, and I, looked at each other with a lot of fear in those first few days, and our lives have been characterized by fear and uncertainty since then. But there’s so much more. Calliope has been our guide in all things compassion, grit, and joy-related. She has shown us what resilience means, what being a fighter means, and what it means to find grace in the smallest moments.
Sturge Weber Syndrome happens following a genetic mutation of the GNAQ gene in utero and results in vascular malformations, which in Calliope’s case impacted both sides of her brain. We were told when she was an infant that there was no knowing what she might or might not be able to do. When we asked a neurosurgeon who was monitoring her for hydrocephalus when she was around 18 months if she would ever walk, he looked at us very kindly and told us it wasn’t out of the question. We didn’t trust his answer. When an MRI showed what might have been an hypoxic event affecting her brain stem, we were told by our neurologist to “go hike the Himalayas with her or get to Disneyland,” before it was too late. That was a many-tears breakdown and a why us, why me, why her stage of our lives. When she was undergoing her 5 surgeries to fix the pressure in her eyes from glaucoma, it was mostly, please let her be able to see, please let her not have a seizure when she wakes up from the anesthesia, please let her eyes be ok.
In the ICU in 2017, after she was intubated following a 90-minute seizure, my question was, Why does she need to suffer so? There are a lot of questions with no good answers.
All of the hospital stays tend to become a blur, but a few things always stand out: how hard it is to get an IV in and keep it in because Calliope is a “tough stick” as they say, her veins are so irregular. So there’s a lot of poking and rubbing and visualizing the blood flowing, just please let them find the right spot and let the blood flow. There’s lots of “please let’s”: please let the same nurse who we like be here tomorrow, please let the blood results be good, please let the EEG not show any seizures, please let us go home soon, please let Calliope regain whatever she may have lost during this latest episode and continue progressing. Please, please, please.
Our darkest times have been mirrored by countless shining times: when she first held her head up, at age 2, when she sat by herself, at 3, when she stood with assistance, at 4, when she started taking steps with assistance, at 5, when she started using a potty successfully, at 6. Her strength and guts and spirit astonish me. Just eating ice cream with her on a summer day is something. The other side of why us is, she’s a miracle, she’s Calliope, and she is who she was meant to be.
I’m writing because we’ve come to a point where we need to ask for help to continue helping Calliope in the best ways we know how. We’ve had an amazing amount of financial and moral support from our immediate family and a dear friend, for which we couldn’t be more grateful. But as we look to do things that will make a lasting difference over the long-term, the price tags get steeper, and so does the burden on our families.
Special needs tend to have “special” price tags attached. For our family, it means medical bills, therapy bills, the special equipment Calliope requires, and much more. The list is long and keeps expanding.
Help us make it possible for Calliope to continue to reach her full potential:
ACCESSIBLE VAN: $50,000
We’re currently using an old Camry, amazingly donated to us by my brother and sister-in-law. But getting Calliope into a car seat from her stroller and vice versa is getting more difficult the bigger she gets. A growing six-year old at close to 40 pounds, she’s more than a handful to maneuver (especially in rain or snow, which seems to be a thing whenever we have to get somewhere for a medical appointment). We need to invest in an accessible van to make it possible for us to get where we need to go, whether it’s for Calliope’s care or, better yet, new family adventures. And an accessible van means that when we go to appointments or travel, we won’t have to worry about where to change Calliope. Hard to believe, but there are generally no changing options for disabled people who are not the size of babies.
ABM NEUROMOVEMENT LESSONS AND TRAINING: $30,000
Calliope has had thousands of hours of physical therapy, occupational therapy, speech therapy, feeding therapy, vision therapy, music therapy and hippotherapy. She’s one of the hardest working people you’ll ever see. For her to hold a fork with food on it and bring it to her mouth (which she can!) takes probably more concentration and focus than what would be required for you or me to parallel park a tractor-trailer.
Calliope has come an incredibly long way, but of course we’re always looking for ways to continue to help her to reach her full potential. In June 2017 I discovered the Anat Baniel Method (ABM), a body movement therapy that is known to be especially helpful for special needs children. ABM capitalizes on the premise of neuroplasticity by helping the brain change itself, guided by very gentle movements.
ABM is based on the work of Moshe Feldenkrais, who you can read about here:
As the neuroanatomist and author of My Stroke of Insight Jill Bolte Taylor says about ABM: "By shifting the focus of rehabilitation from the muscles and bones to the brain, we unleash the staggering potential of the brain to heal itself."
We tried ABM over the summer of 2017, and both Calliope and I loved it. Our amazing NYC practitioners, Sharon and Marcy, are masters at helping Calliope understand what her body, and by extension her brain, are capable of. We saw positive changes in her mood, her connection to her body, the range of her movements, and her vision as a result of ABM lessons. Calliope was born with a sweet temperament, but since ABM, she’s been laughing, smiling and generally taking more joy in herself and her life. Meanwhile, I started to become fascinated by the method itself, and how it could help people, and in the fall of 2017, with the financial and moral support of dear friends and family, and most importantly, Pat, I started the training to become an ABM practitioner myself.
I’ll be graduating from my basic training in January, which means I’ll be certified to work with adults. In order to work with children, I also need to take the Children’s Mastery course next year, which will finish in November 2019. The course next year, including travel and additional childcare expenses, will cost approximately $18,000.
In addition to my ongoing training, we feel it’s crucial for Calliope to receive ongoing ABM lessons over the next year from seasoned practitioners in NYC, which cost around $1,000 per month.
So the idea is that, to create a space for ABM to help Calliope on an ongoing basis, I’m learning everything I can to be able to provide ABM for her myself over the coming years. In the meantime, though, we need help/support to reach that goal.
We’ve always been surrounded by an amazing community of family and friends on our Calliope journey, all of whom have already helped us so much. We’re hoping to expand the reach of this community with this campaign, so please share with anyone you feel would want to help, and that includes on Facebook or wherever else you think it could have an impact. Thanks for reading and helping in any way you can, you have all our gratitude and love.
- Ariana Speyer and Pat Sullivan, Calliope's parents
- $50,000 for accessible van: Family members have already pledged to match all donations up to $25,000
- $18,000 for ABM Children’s Mastery tuition, travel expenses, and additional childcare
- $12,000 for one year of ABM lessons for Calliope
- $20,000 for ongoing miscellaneous expenses, including medical bills, special equipment, supplementary childcare, and much more
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