Hi everyone. My daughter, Joyce Anne C. Pangilinan a.k.a Jotay was born 6 weeks premature weighing only 1.7lbs and spent 36 days in the NICU. Two years after, she was diagnosed with Spastic Diplegic Cerebral Palsy (CP) which makes standing and walking difficult for her due to excessive muscle contractions and also a problem associated with her feet coordination and standing balance. Her neurologist told us that her upper body’s extremities are not affected at all and are functioning normally.
She is now six years old, home schooling, and is becoming an amazing little girl. But long-term care and medical bills, supplies and equipment are going to run a hefty size, and we want to make sure she always has what she needs to thrive as her best self.
Jotay is a very sociable, joyful and an adorable little one. She loves to share her random videos and pictures online via Youtube, Facebook and Instagram and is very appreciative even in small things which you can easily notice on her videos. When she was 3 years old, Jotay wore her AFO’s (foot braces) every day which helped to assist her in standing on her own and even tried to walk slowly.
As our family and friends witnessed her journey from the very beginning, Jotay showed how determined she is and hoping that one day she will be able to walk, run and also play outside with her cousins and friends just like any other kids. She is also very excited with the news of her surgery and even clinked glasses with us last year to wish herself good luck on her surgery. Unfortunately, COVID-19 strikes the country and has implemented the Enhance Community Quarantine failing us to push through with her surgery. Jotay is a smart girl. Through the help of our technology, Jotay teaches herself how to speak in English, Spanish and Korean. She learned how to speak in English with European accent just by watching her favorite shows on Youtube Kids. She even learned about the solar system on her own. Her tutor even commended her with her good communication skills. Which we are so proud of (sometimes a little annoying coz she won’t stop talking about it hehe). Those are just a few of her big achievements despite her condition.
Considering her condition, Jotay is a very strong little girl who can stand tiptoed with assistance (shown in pictures). She will sometimes pull herself up to stand and call us and ask to take a picture of her posing to be the next beauty queen. Also there are videos shown where we guide her in standing and she will take a few steps (tiptoed) and even run, acting like we are chasing her from behind. She always did this when she was still using her crib for sleeping and even after using our sofa and cabinets as her assistance to stand.
This year she will undergo a life changing surgery to give her the ability to one day take her very FIRST INDEPENDENT STEPS!! Cerebral Palsy can’t stop her!!
April this year, as we reach our target budget, our hope is that Jotay will undergo surgery called Bilateral Multilevel Lengthening (Tendon, Hamstring, Achilles) at Makati Medical Center to help get rid of the spasticity in her body caused by Cerebral Palsy. “Spastic" is high muscle tone and tightness in her muscles which is very painful and is getting worse as she gets older due to growth spurts. This surgery will help Jotay’s feet flatten, bones and muscles to grow and develop properly which will give her a greater chance of independent standing and a chance for her to walk (with mobility assistance). Without this surgery she may be bound to a wheelchair later in life and may not have any independence as the spasticity will cause her pain and tightness.
After the surgery she needs intensive physical therapy (prescribed by her doctor) for a specific time frame for her to be able to learn to walk (with and without mobility) and build strength throughout her entire body. However, my HMO only covers a limited number of PT visits for the year which a portion of her surgery fees will max out the total amount of our family shared unit and will be needing to pay the amount of PT out of our own pockets after. Physical therapy is crucial for Jotay after surgery for it to become successful as it can help loosen stiff muscles, promote physical healing and wellness, help with balance and posture issues, build stamina and strength, and many more. She may also need a walker, braces and other forms of mobility assistance after surgery, so she can one day take her very first independent steps.
We don't want our daughter to be limited on things in life due to her disability, but be able to fully enjoy life without pain and limitations caused by CP. We fully believe that this surgery will give Jotay the dream of standing on her own and even walking even with a device. Living the best life possible and to enjoy her life like a normal person! As a mother, and we as parents, we always pray and do everything we can to see our child succeed. My dream for Jotay one day is giving her the freedom to walk, play around just like any kids, live and love her precious life! ️
Thank you so much for taking the time to read Jotay’s story. God Bless you!
Puliai, Pujohn and Jotay