FELIX NEEDS YOUR HELP (baby with Cerebral Palsy)

My name is Jessica (Rose) Crim, and this fundraiser is for my son’s Cerebral Palsy treatments. Thousands of dollars are built one dollar at a time, and every donation will contribute to achieving a better life for Felix.

THE BIRTH

In May 2022 we welcomed our second child, a strong and beautiful 8lb 12oz baby boy who was one week past his due date. We had prayed for this child for years and were so grateful to finally be holding him in our arms. If you’re a mama, you understand that pregnancy and childbirth can be both miraculous and traumatic. I was grateful to have gotten through my second pregnancy, labor, and delivery essentially without incident. Felix was a healthy, happy, peaceful new addition to our family. He easily passed all of his screenings and we were able to leave the hospital after just one day. We anxiously whisked our new baby home to meet his big sister; she was just a young two years old, but she knew and loved “Baby Felix” from the moment they met.

THE DIAGNOSIS

In the beginning, Felix was exceeding milestone expectations. He was raising his head within the first few hours after delivery. He started smiling while awake at twelve days old. By two months he was tracking with his eyes and even occasionally rolling from tummy to back. His development continually progressed until 3.5-months old when we really started noticing a discrepancy in his preference of right vs left; we were slightly concerned about this and reached out to his pediatrician. He was examined and it was determined that his left arm seemed slightly tighter than his right, but for his age he was still on track with normal development, therefore we agreed with the pediatrician that we would just wait/monitor and see how he progressed. In the meantime, we worked with him daily on opening up his left arm and fist to encourage stretching and movement. It seemed like the more we helped him, the more he was able to do on his own, but the progress was always short-lived as his rigidity was reset at the beginning of each wake period.

At his four-month checkup, the right-hand preference was still notable. However, he was also checking all the boxes of what is looked for in a four-month old, therefore we agreed to continue to wait and monitor. As Felix continued to learn new things the discrepancy of right vs left became more glaring, i.e. he figured out how to grab his foot - but it was only his right foot with his right hand, and he showed no interest in trying to touch his left foot. With our increasing concerns he was referred to a pediatric neurologist, and at five-months old Felix was diagnosed with Cerebral Palsy (CP) and the cause was declared undeterminable. 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 son was starting life with a handicap.

CP is an umbrella term used to classify disorders related to brain damage with associated impaired muscle coordination. Felix’s specific CP diagnosis is Hypertonic Hemiplegia; this means the joints and muscles on the left side of his body are stiff and weak. Since Felix is still a baby, his prognosis is not yet clear; but the majority of medical providers that have been working with him have expressed optimism for his future due to his willingness to corporate with therapies and the multitude of early interventions he is receiving.

THE TREATMENTS

From the day we are born, our brains are continuously being rewired through an ability termed neuroplasticity. The brain damage that Felix 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.

Felix’s current CP interventions include:

● Weekly Occupational Therapy (OT) and Physical Therapy (PT) – These therapies promote his brain’s ability to create new neural pathways to compensate for the area of his brain that is permanently damaged. OT is primarily focusing on the upper half of his body. PT is focusing on locomotion, which at this age includes his entire body. Both therapies are helping him with balance, flexibility, and muscle strengthening with the goal of being able to use his body more evenly.

● Pediatric Chiropractic Care Two to Three times per Week – CP often contributes to secondary conditions like skeletal deformities, osteoarthritis, and chronic pain. Several case studies have shown that children with CP who receive chiropractic care exhibit neuromuscular and mobility improvements, as well as decreased chronic pain. These chiropractic treatments are helping to manage his stiffness and improve his range of motion, which in turn is helping the OT & PT sessions be more successful.

● Quarterly follow-ups with his CP Specialty team in St Louis – This team of doctors and therapists provide support and guidance for the overall goals and approaches to care that Felix receives. They will fabricate custom orthotic devices/braces if he needs them in the future, i.e. when he starts learning to walk. 

● Bi-Annual exams with his Pediatric Neurologist – The doctor who first diagnosed Felix will continue to oversee his development while also monitoring for the indication of additional interventions.

Of course, we also work with Felix every day through play and stretching to continually support the progress he is making.

THE ASK

Of our many close family and friends, we have only been able to share this news with a small few, which means many of you reading this are just now learning that Felix has CP. Please do not take it personally if we have not spoken to you directly about this, as it is a difficult topic and each time we have told his story it has been very painful. These past several months have been filled with joy and heartache as we have been doing our best to figure out how to support Felix in achieving his highest quality of life.

Because many of the services Felix needs are not covered by insurance and most of the specialists that are working with him are out-of-network, we have already spent thousands of dollars out-of-pocket for his medical care and treatments in just these past few months. This has overwhelmed our family financially since our savings were beyond depleted during my unpaid maternity leave. And with a non-curable disease like CP, there is no end date to his treatment needs/expenses. It has been difficult enough just trying to comprehend what this diagnosis actually means for Felix’s future, let alone stressing about how to pay for his specialized care.

My husband, Levi, 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 Felix’s story can reach hundreds of people who are willing to help him.

Every dollar that we receive for Felix will be put into an account that has been designated for his CP medical bills only. No donations will be used for medical travel expenses, home therapy equipment, etc.

Thank you so much for taking time to read this.

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