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Help The Checo Family Fight EDS
Hi, my name is Daisy Checo. I was diagnosed with a condition called Hypermobility Ehlers Danlos Syndrome (hEDS, commonly known as EDS), 7 years after my symptoms began in 2009. It’s been over a decade since I had to leave my role as a Property Manager, dealing with debilitating pain and a slu of other related conditions.
EDS causes my joints to partially dislocate, multiple times a day. As it has progressed, my spine, jaw, shoulders, ribs, and extremities were staying dislocated for days at a time. It also affects my GI tract, causing over 60 food sensitivities; staying healthy is expensive and food prep is challenging because of my condition.
Basic self-care is like trying to keep a stringed puppet moving. The strings represent my muscles and ligaments trying to keep my spine, ribs, shoulders, knees and ankles from partially dislocating all day long. Other symptoms of EDS include Vagus Nerve disfunction, which affects my senses, digestion, muscles, and mental health.
In 2017, doctors told my husband and I, that it would be nearly impossible for us to have children. However, in 2019, we were blessed to have our son, Sebastian. Unfortunately, my condition doesn’t allow me the freedom to be the active mom I yearn to be.
Treatment:
After years of research, countless doctor and therapy appointments, we learned about Comprehensive Prolotherapy, the only treatment that can cure many symptoms of hEDS. My condition has caused such degeneration, that we had no choice but to make this treatment an immediate priority.
In December 2020, I traveled from our home in Charlotte, NC, to Caring Medical in Fort Myers, FL; I went for 2.5 months of Comprehensive Prolotherapy by Dr. Ross Hauser. He has been helping EDS patients from all over the world for 28 years but treatment is not covered by insurance. Aside from regenerative medicine therapies, extensive physical and occupational therapy are required for my rehabilitation; travel expenses, food, and housing are all out of pocket as well.
My amazing husband, Jose, has been supportive through everything and is a true provider for our family. And my in-laws have helped immensely with caring for our son. But as any family facing health challenges knows, funds for medical expenses do not come easy. We did not want to ask for help but were eventually convinced to start a fundraising campaign to help with the costs.
After 2.5 months of prolotherapy, at $11,000 per treatment (for multiple joints), we have exhausted all of our financial resources. We have accumulated over $60,000 in debt and desperately need help to continue treatment.
How donations will be used:
Donations to Help Hope Live will help get me to the next treatment and hopefully to include treatment for my slipping ribs syndrome, shoulders, and knees.
My desire is to regain independence to raise my baby boy, become active enough to give back to my community, and raise awareness of EDS and the types of lifesaving treatments that can help others.
We’ve chosen to fundraise for Help Hope Live because they assure fiscal accountability of funds raised and tax deductibility for contributors. Donations will be used to pay for and/ or reimburse approved medical and related expenses.
To make a tax-deductible donation to this fundraising campaign, click on the Give button. For more information, please contact Help Hope Live at 800.642.8399.
For more about Daisy’s battle with hEDS, please check back for further updates.
Thank you for your support!
Updates (13)
September 21, 2021
August 3, 2021
This is me being treated with my own bone marrow for Stem Cell H3 Prolotherapy. Dr Ross Hauser asks about Help Hope Live, and answers my question to “why don’t all EDSers know about his specific treatment?”
August 3, 2021
On 7/19/21 Dr Hauser drilled into my bone to extract bone marrow- to insert stem cells into my hypermobile joint tissues.
July 13, 2021
We’re hoping the treatment will prevent the need for a feeding tube, which is common with Ehlers Danlos Syndrome. There are so many complications with a feeding tube either via the nose into the stomach, or through a direct hole into the stomach. My stomach bloats so bad, and is painful every time I drink water, eat, stand up, sit down, go up the stairs, or talk for longer than a few minutes. If this symptom is due to spinal instability affecting my Vagus nerves, then it should get better with treatments…Thank you so much for your donations❤️
July 3, 2021
We Hosted a 50-50 raffle Donation fundraiser for my Ehlers-Danlos syndrome related expenses. It turned out amazing! We received $590 of ticket donations, so the winner received $295 cash!
June 16, 2021
My baby has to live with my in-laws because my Ehlers Danlos Syndrome Hypermobility has gotten too severe…
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Most times I could only see him briefly while someone is there to help. I miss him so much.
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I developed a new strangling sensation around my throat. Most of the day, it feels like I have a tight shirt around my neck. And as I move throughout the day, my right clavicle produces a headache.
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It’s a mental struggle…
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In this clip, I am visiting my baby before he goes to bed. (He lives downstairs with my amazing In-laws.) I want to be the one to put him to bed, to smell his baby breath as he breaths calmly to sleep, and cuddle him when he wakes up in the morning. But I can’t right now…
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We decided that I have to focus only on treating my ribs, shoulders, clavicle, neck & TMJ; because I need treatment sooner than later. But we don’t have $11k for a full treatment.
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I do have an electric Wheelchair and lower body Brace though. So that will help me get around until I can get my lower body treated.
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My next treatment is scheduled for next month.
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Thank you so much for taking some of your precious time, to read about my battle against Ehlers Danlos Syndrome.
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For more about my battle with Hypermobility Ehlers Danlos Syndrome, please subscribe.
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This is our Facebook page:
www.facebook.com
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This is an Interview about Mobility Through My Eyes as I fight this condition:
helphopelive.org
May 5, 2021
5 treatments stopped my 1st cervical vertebrae from hitting my skull. That was causing debilitating headaches. I could barely lay down without triggering those headaches.
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Towards the end of the video, you can see my jaw bone popping in and out of place. 5 treatments of comprehensive prolotherapy stopped the pain from my jaw.
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However, my partially dislocating clavicle still pulls on the soft tissue that affects my jaw.
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Same thing happens when my shoulders sublux, (partially dislocating).
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I’ll need 8 or more treatments in each joint that is affected by Ehlers Danlos Syndrome.
Thank you for reading and watching this, and for your help❤️
April 26, 2021
Holding my head up – Most of my pictures are of me leaning my head on someone, reclining, or laying down. We’ve even had to keep a bed in the living for me. My husband calls it “function over form. You can see some examples in my album titled: “Painful to hold up my neck.”
April 21, 2021
Greetings! Thank you for stopping by. In this video, my amazing husband shares how my EDS affects him, and asks me what my outlook is for my condition.
April 19, 2021
Constantly dislocating is excruciatingly painful. For the last week, my ribs, and left shoulder have been popping in and out of joint everytime I reach for something, or sit down. So I try to walk around as much as I can, but it causes my hips, knees and ankles to sublux. If I could hover in the air, I feel like it would help bring some relief.
Perhaps going into space for a mini vaca would help?…
The video to this update, was me 3 years ago showing my work space with EDS. Today, my condition is a lot worse.
I miss my son. I want to hold him so bad. But it’s so painful…
April 12, 2021
SLIPPING RIBS
Have you ever had a rib partially dislocate?
That’s one of the worse symptoms of EDS.
Today my top rib popped back in place after 5 days of being out of place. It felt wonderful!
But around 6pm, my son ran to answer the door bell, and reaching out for him, my rib slipped back out again.
I’m in so much pain again.
I don’t show it on my face, because what’s the point?
I just have to focus on the fact that it will eventually pop back in. Hopefully sooner than later.
This is why I need so many treatments. I have so many joints that dislocate all day everyday. It stops me right in my tracks.
When my rib popped back in, it was a pretty loud pop. My husband heard it, sitting a few feet away. When my bones pop back in, that sound is music to my ears.
But when the sound is from them popping out, it’s an emergency siren, for pain to start.
March 30, 2021
Before Prolotherapy, I had to treat Eagle’s Syndrome. To make sure it wasn’t the cause of my painful symptoms.
March 27, 2021
This the 1st time I see my baby boy after 2.5 months out of state for treatment.
Photo Galleries (5)
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Guestbook
August 14, 2021
Donation through (Sisters Healing & Evolving Inc.) raffle fundraiser: www.facebook.com “SHE, inc.”on FB- facebook.com/SistersHealinc/
Daisy Checo
August 12, 2021
¡Estamos unidos para luchar contra el síndrome de Ehlers Danlos, en el nombre de Jesús!
Virgina Tirado
July 27, 2021
Sponsored Raffle Donation Tickets to Help The Checo Family Fight EDS
Anonymous
July 20, 2021
You got this Cuz...the Lord has put in your path those who also serve Him...how could it not be for His glory? :* Love you lots
Melissa Lorenzo
July 12, 2021
WE HOPE YOU FIND & GET ALL THE TREATMENT YOU NEED, & YOUR JOURNEY CAN HELP OTHERS TOO. LOVE, TITI IRIS & ARACELY
Anonymous
July 1, 2021
Go Daisy! We love you, sis!
Mariam Greb
June 16, 2021
Stay strong, Daisy!
Kristyn King
May 8, 2021
Go Daisy and Jose! You are an inspiration to us all:)
Fred Caudill
April 8, 2021
Love Dad and Millie
Anonymous
March 20, 2021
We love you
Nancy Rizzo
March 17, 2021
We are honored to be a part of your journey, sis. Rooting for you and your family's needs to be met and for your full restoration in health. Love you!
Mariam Greb
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Help Hope Live
Note in memo:
In honor of Daisy F. Checo
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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