Posted on 06/08/2024 4:01:54 AM PDT by jmaroneps37
On 1/6/24, the Modica’s world was turned upside down. Our sweet Ali Rose has been in the hospital relentless in her efforts to lead a normal 4 year old life again.
We ask for prayers and support for Ali’s recovery and her brave family during this stressful time. While Ali remains admitted for medical recovery in the hospital in Philadelphia, her loving parents have not left her side.
Ali’s recovery will take efforts of various teams and we are hopeful that creating this will help alleviate any financial burden that may come in the next months. Updates (4) Today by Dalainna Modica, Beneficiary About Ali: Ali Modica is a bright shining light to the world. At 4 years old, she is the oldest of 3 kids and watches and looks after her little brothers, Joey (3) and Carmine (1). Ali loves to color, play soccer and dance to hip hop and rap. Her favorite artist is Cardi B. Ali has a vibrant, sweet, and humble personality, even at 4 years old puts her brothers before herself.
Ali’s Story: Ali had been sick with the flu from the holidays. On January 6, 2024, she woke up and had a hard time walking, eating, and breathing. Her parents took her straight to the hospital at Jersey Shore Medical. The next few hours of what was thought to be a simple complication from the flu turned into a nightmare. She suffered rhabdomyolysis secondary to the flu, and it attacked her heart. Immediately upon arriving to the hospital, Ali was put on a ventilator and the doctors told her parents that she needed to get put on an ECMO machine ASAP, but they didn’t have it at the hospital she was at. She would have to be transferred in a snowstorm over an hour and a half away to get to that machine if she had a chance in surviving.
Defying the Odds: Before the transfer, Ali’s parents were told she had a 65% chance of surviving the trip from Jersey Shore Medical to Children’s Hospital of Philadelphia (CHOP). As soon as she got to CHOP, she had a cardiac arrest where she coded for 18 minutes in the hands of incredible doctors who thankfully saved her life.
Once she was stable, Ali was put on an ECMO machine for a week. While the ECMO saved her life, her major organs took a hit - the kidneys, her lungs and ultimately her heart from the cardiac arrest.
Ali came off the ECMO but it resulted in continuous dialysis and potential permanent damage to the heart.
Doctors prepared Ali’s parents for the possibility of her needing a heart transplant, a kidney transplant, and possible tracheotomy, as her organs were damaged from the trauma.
While her parents looked for answers and help - Ali fought like hell to defy the odds. 2 months later, Ali’s kidneys kickstarted and were perfectly functioning for her age. Her heart, the problem which she originally came into the hospital for, was perfectly normal.
She began to breathe on her own and didn’t need a trach. She defied the laws of medicine and because of her strong spirit and her fighter mentality, her organs returned perfectly to that of a normal functioning 4 year old.
It is reasonable to attribute Ali’s return to some normal functioning to the power of prayer.
The strongest 4 year old we know:
Unfortunately, when Ali went into cardiac Arrest for 18 minutes, her brain lost oxygen and it affected the motor skills and speech part of her brain.
When you speak to Ali, she knows everything going on.
She recognizes people, reacts to and shows she knows memories, and even laughs and cries while making new memories.
She is still laughing and reacting to things around her, but she has not yet gotten her speech back, she cannot walk on her own or do everyday independent living functions like going to the bathroom or eating on her own.
Ali is cognitively there but she is unable to speak, move, or hug her family.
Ali has proven herself to be a fighter through this entire unfortunate tragedy.
She will not give up and neither will her family and friends close to her.
Her parents saved her cord blood from when she was born and are now looking to find studies for Hypoxic brain injury from cardiac arrest (non traumatic brain injury).
Ali is currently on the waitlist for Duke and Rutgers stem cell research programs.
There is so much hope for her to get back to her playing soccer, dancing to Cardi B and being the older sister that watches out for her brothers.
Ali will fight and recover in any stem trial she is accepted into - she’s already proven that from her medical miracles.
The next steps for Ali:
Unfortunately, these studies take a toll on the family between time and finances.
These programs are not covered by insurance and are expensive.
As the family continues to find the right doctor and program that will get Ali back to communicating, they ask first and foremost for prayers, as the prayers have worked miracles to get her to where she is today.
They are also looking for grants or funding that would help alleviate the financial burden these studies will cost the family,
How to help:
1. Connectivity into doctors and research studies: Ask around!
You may not know anyone off the top of your head, but maybe someone in your family, friends, or network does.
Anyone who knows of or has connectivity into doctors, hospitals, Healthcare researchers that are specialized in or doing stem cell studies on Hypoxic brain injury from cardiac arrest (non traumatic brain injury) is a big help our family as we find the right next step for our Ali girl.
We are looking to learn too and where we need to concentrate our efforts on.
2. We are looking for any grant programs or funding that could help the cause to get Ali the chance she deserves to speak, walk and be independent again.
3. Spreading awareness to help our baby girl and other people and families who go through this.
Let’s bring more research to this cause. We never knew the flu could cause this much damage.
Lastly, our friends started a gofundme for Ali when this first happened and we are incredibly grateful for everyone who has supported Ali.
These generous donations have been overwhelming and we thank you for your kindness and generosity.
Every penny raised will continue to be used in support of Ali, her therapy and hopefully her stem cell research.
We KNOW she will continue to defy the odds, get her motor skills back, and help others like Ali in the future and their families who go through this.
Thank you all for every support you’ve given our family this year. It means more than you will ever know.
If you know of any research or connections that can help Ali, please contact Dalainna or Joe through Freepmail to jmaroneps37. I will forward what you send.
Your prayers are enough.
But, if you would like to help the family and support therapies and the research study!
See older updates
So sorry to hear this and prayers up.
My niece contracted encephalitis at age four after a bout of the flu. Doctors told my sister she was brain dead.
She managed to claw her way back, had to relearn everything such as walking and feeding herself - she ended up graduating from high school, college and graduate school with scholarships and honors.
These days, she is married to a military officer and a wife and mother. You’d never know how close she came to losing her life.
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Oh, Lord, how this child has suffered! Father, in the Name of Jesus, we ask for a miracle for Ali, that you would restore her brain, her cognitive abilities, her speech and her motor functions. You alone are holy, You alone are worthy to be praised, You alone can do these things! There is no god like our God! We give You all the praise and the glory, in Jesus Name, amen.
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