Guinny Rodriguez

Family and friends of Guinevere Rodriguez are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with her diagnosis of Hemiparetic Dystonic Cerebral Palsy.

Guinevere has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.

Read more about her story below:

Many of you may know our sweet Guinny Lane, but you may not know her story just yet. Aside from your typical pregnancy symptoms my pregnancy with Guinny was great. Going into my labor induction with Guinny I was expecting my labor and delivery to be similar to my previous two births. Little did I know that from the moment I stepped foot into the hospital, my experience this time would change mine, my daughter’s, and my families life forever.

Guinny came into this world after 30 hours in labor via emergency c-section. She suffered Hypoxic-ischemic encephalopathy (HIE) during labor. Which has resulted in her diagnosis of Hemiparetic Dystonic Cerebral Palsy.

We were expecting to bring home a perfectly healthy and neurotypical baby girl. We noticed almost immediately that was not the case. As Guinny began to grow and develop we noticed that she was not meeting the necessary milestones. This took us on a year long journey to get a diagnosis (not only a singular diagnosis of CP but also a Dystonia diagnosis which is a disability on its own). Two days before her first birthday all of our questions were answered when we met her amazing Neurologist.

As you can imagine this diagnosis comes with many life changes and challenges. Our lives changed overnight when Guinny was born and we were not prepared, for all that comes with a diagnosis of this magnitude. As a family, we have so much to be thankful for, and we remind each other of this often, but it was devastating to learn that our daughter was starting life with a handicap.

CP is an umbrella term used to classify disorders related to brain damage with associated impaired muscle coordination.
Since Guinny is still a toddler, her prognosis is not yet clear; but we are hoping that with early intervention she is able to thrive as an adult.

From the day we are born, our brains are continuously being rewired through an ability termed neuroplasticity. The brain damage that Guinny has sustained cannot be reversed, but the brain is much more plastic during early childhood. Therefore when it comes to CP brain injury recovery, age 0 to 5 years is the most critical time for intervention.

Guinny currently receives Occupational Therapy (OT) through Early On services. Physical Therapy (PT), Speech Therapy (ST), and Feeding Therapy through an outpatient clinic. We attend multiple sessions per week.
Her current care team consists of:
Pediatrician
Therapists
Neurologist
Gastroenterologist
Ophthalmologist
Neurology Dystonia Specialist
General Surgeon
Dietitian

These past several months have been filled with joy and heartache as we have been doing our best to figure out how to support Guinny in achieving her highest quality of life.

During our time of finding a diagnosis and getting her approved for Children’s Special Health Care we spent thousands of dollars out-of-pocket for her medical care and treatments. This has overwhelmed our family financially since our savings were beyond depleted during my maternity leave. And with a non-curable disease like CP, there is no end date to her treatment needs/expenses. It has been difficult enough just trying to comprehend what this diagnosis actually means for Guinny’s future, let alone stressing about how to pay for her specialized care. During this time I have also had to resign from my teaching position at Holland Christian to care for Guinny’s 24/7 medically complex needs.

My husband, Ruben, and I are generally very private about any struggles we might be facing. We know that everyone has their own challenges and we don’t want to burden others with our problems. Asking for financial help makes us feel incredibly awkward and vulnerable, but we just don’t know what else to do at this point. Our hopes and prayers are that Guinny’s story can reach hundreds of people who are willing to come along side her in this journey.

Our current and most urgent need is a handicap accessible vehicle for Guinny. As she gets older her equipment gets bigger and the load that we have to carry is extensive. We are needing a large cargo capacity SUV that can carry her gait trainer, adaptive stroller, adaptive seat, her scooot wheelchair, her feeding pump and supplies, a fridge for her blended meals and medicine. Our current vehicle unfortunately does not meet those needs and this has been a daily struggle in figuring out how to get to and from destinations with all that she needs and fitting our family of five. As Guinny gets older we also know that she will be a part time wheelchair user. We will start the fitting process for a wheelchair starting late this summer. As we think of the future we would also like to raise funds to make this SUV wheelchair accessible for when that time comes.

As a now one income household this is something our family can simply not afford. As I mentioned above, Ruben and I have put ourselves in a vulnerable position to ask for you to join us on this journey so we are able to provide Guinny with a quality of life that she deserves.

Thank you so much for taking the time to read through a portion of our story. We are open to an honest and transparent conversation if you’d ever like to come over for coffee or dinner.

God uses what we plant and leads others to spread further seed or water the ground, thank you for sowing seeds into a story that only God can transform.

-The Rodriguez Family

For more information, please contact Help Hope Live at 800.642.8399.

Thank you for your support!