Lily’s Love to Walk Again
Donation protected
Our 9.5 yr old daughter, Lily, sustained an anoxic brain injury at the age of 4.5 yrs old (2018), after contracting RSV and Strep-pneumonia. She was born full term and met her all of her milestones.
Here’s her story: We went to the pediatrician’s office on a Friday, and she had clear lungs and just a runny nose. By Sunday, she needed go to the ER. Her chest X-ray showed a small spot of pneumonia in her left lung. She was given an antibiotic and sent home.Two days later, on early CHRISTMAS MORNING, an ambulance was called, because she was “belly” breathing, 60 breathes per minute, and oxygenating at 89%. She was taken to the same ER “with lights and sirens” due to her incredibly low oxygen levels.
At the hospital, they had to intubate her to restore her oxygen levels. Lily was then transported to the nearest Pediatric Intensive Care Unit (PICU) to be monitored. She was able to be extubated the next day, but still needed intensive breathing support.
That was the LAST TIME we heard our beautiful little girl say “I Love you” to us with her sweet little voice.
The next day, she had to be re-intubated and transported to a different hospital, because she needed an even HIGHER level of care. On Dec 27th. SHE WAS PLACED ON VV - ECMO. By DEC 28, 2018, Lily then was placed on VA-ECMO (the highest form of life support), as well as, a CRRT machine to help eliminate 22 LITERS OF FLUID that the medical team had to give her to stabilize her body. Our poor baby’s body looked like the “Michelin Man” from all of the fluid and started to make blisters on her skin, because there was no where else for the it to go.
On Feb 8th, the ECMO Machine was removed. She was extubated and breathing room air by Feb 16th, and a “G-Tube” was placed in her stomach for feeding. At this point, Lily She was then released to an inpatient facility to continue her recovery from March 8, 2019 - May 26, 2019.
During this time, her middle brother Nico had his 3rd birthday party at the hospital, and her youngest brother Enzo was BORN in April 2019! (I was 6 months pregnant when Lily went into the hospital).
Lily has worked Every…. Single….Day on her recovery journey! She is SO Strong that within the past 5 years, she has had to:
- be WEENED OFF of sedative meds with METHADONE
- try to relearn how to walk, talk, sit and eat independently
- have her G-tube removed
- use an eye gaze communication device to tell us what she wants and needs
- attend twice weekly PT, OT and Speech therapies all year long and miss out on school time to regain her abilities that were lost
She also does all this while attending full-time school.
We have be fortunate to take Lily to the most phenomenal pediatric therapy center - NAPA CENTER. Here she does twice weekly therapy for PT, OT & Speech. She also has just completed her NINTH 3 week Intensive for PT, OT and ST! These intensives are no joke, as they are 5 days per week, for 4 hours per day, for 3 straight weeks! Lily also continues to also do other therapies to assist in her recovery:
- horse therapy with a speech pathologist
- vision therapy
- functional neurology
- cold laser therapy
- Trexo Robotic Walking
- And more!
Through Fundraising and family support, we have been able to take Lily to some INCREDIBLE PLACES to do medical treatment to her her regain skills:
* In September 2022, Lily was given the opportunity to go to Panama City, Panama, to receive STEM CELLS! This was a life changing event that has helped in her long-term recovery. Unfortunately, it is also a very EXPENSIVE therapy…. $16,000 for just the stem cells which is not including the traveling to and from the country of Panama. (This treatment is also not covered by insurance, even though it has shown the greatest SUCCESS for her).
* June 2023, we traveled to Mexico for a month long stay for her NEUROCYTONIX BRAIN TREATMENT. NeuroCytonix. Inc. is a biomedical technology company focused on developing innovative revolutionary treatments for neurodegenerative diseases such as cerebral palsy, stroke, and traumatic brain injuries. Their technology utilizes the combination of magnetic fields and radiofrequency waves to stimulate brain regeneration and restore the broken neural network. Upon being accepted into the cerebral palsy protocol, patients spend approximately 32 days in Monterrey, Mexico. The day after your arrival to Monterrey, the patient will undergo a sedated MRI along with blood work and an EEG. The next day treatment will finally begin for 28 days straight one hour a day in the Cytotron machine. After 28 days of treatment are complete, the patient will undergo one more sedated MRI, blood work and EEG. Most importantly, the patient and family receive data from a tractography, which shows how many neural tracts were present prior to treatment and how many they gained as a result of the 28 days of treatment.
This was the GREATEST TREATMENT we have done for Lily! From this 28 treatment, she has gained/obtained:
- the ability to tall kneel and sit her butt to her heels - Half kneel to stand with assistance
- Use her eye gaze communication device even more proficiently to tell us her needs and wants, AND communicate like a typical kid with her friends and family
- SIGNIFICANTLY LESS muscle spasticity
- The ability to STAND w/ her arms propped on a bench in front of her for 2 & 1/2 minutes!
- Use her VOICE to say: Da, Ma, Enz, Nic, Pa, Nan and so SO MUCH MORE!
This treatments initial cost was $60,000 and through the love and support of family and friends, we were able to do this treatment!
This year the cost is $45,000 for being a returning patient!
Check out these incredible videos of pediatric patients: https://youtu.be/Svzxas26S4w
Lily is the MOST INCREDIBLE LITTLE GIRL❤️…. She is kind, considerate, caring, loving and funny. She loves deeply and laughs whole heartedly! She is a wonderful big sister, amazing friend and the FIERCEST LITTLE WARRIOR! Her journey has taught us so much about LOVE ❤️, LIFE and what is MOST IMPORTANT . She continues to shows us what Strength, Determination and that “NEVER GIVE UP” Attitude can do! She is an INSPIRATION to us all and continues to remind everyone to live in the moment. She is moving mountains, breaking through the "NO's" and showing ALL that she can accomplish.
We have put together this fundraiser to HUMBLY ask for your support in achieving ours and our daughter’s DREAM of walking again!! Anything you can do is truly appreciated and we are so grateful! We know it takes a village to raise children and are so BLESSED with the people around her and our family! Thank you for taking the time to read about our SPECIAL little girl and for showing your continuous love and support! Please feel feel to follow Lily's journey on IG: https://www.instagram.com/lilystrongforliliana?igsh=NDF0dTQwNDZpZXA5&utm_source=qr
Here’s her story: We went to the pediatrician’s office on a Friday, and she had clear lungs and just a runny nose. By Sunday, she needed go to the ER. Her chest X-ray showed a small spot of pneumonia in her left lung. She was given an antibiotic and sent home.Two days later, on early CHRISTMAS MORNING, an ambulance was called, because she was “belly” breathing, 60 breathes per minute, and oxygenating at 89%. She was taken to the same ER “with lights and sirens” due to her incredibly low oxygen levels.
At the hospital, they had to intubate her to restore her oxygen levels. Lily was then transported to the nearest Pediatric Intensive Care Unit (PICU) to be monitored. She was able to be extubated the next day, but still needed intensive breathing support.
That was the LAST TIME we heard our beautiful little girl say “I Love you” to us with her sweet little voice.
The next day, she had to be re-intubated and transported to a different hospital, because she needed an even HIGHER level of care. On Dec 27th. SHE WAS PLACED ON VV - ECMO. By DEC 28, 2018, Lily then was placed on VA-ECMO (the highest form of life support), as well as, a CRRT machine to help eliminate 22 LITERS OF FLUID that the medical team had to give her to stabilize her body. Our poor baby’s body looked like the “Michelin Man” from all of the fluid and started to make blisters on her skin, because there was no where else for the it to go.
On Feb 8th, the ECMO Machine was removed. She was extubated and breathing room air by Feb 16th, and a “G-Tube” was placed in her stomach for feeding. At this point, Lily She was then released to an inpatient facility to continue her recovery from March 8, 2019 - May 26, 2019.
During this time, her middle brother Nico had his 3rd birthday party at the hospital, and her youngest brother Enzo was BORN in April 2019! (I was 6 months pregnant when Lily went into the hospital).
Lily has worked Every…. Single….Day on her recovery journey! She is SO Strong that within the past 5 years, she has had to:
- be WEENED OFF of sedative meds with METHADONE
- try to relearn how to walk, talk, sit and eat independently
- have her G-tube removed
- use an eye gaze communication device to tell us what she wants and needs
- attend twice weekly PT, OT and Speech therapies all year long and miss out on school time to regain her abilities that were lost
She also does all this while attending full-time school.
We have be fortunate to take Lily to the most phenomenal pediatric therapy center - NAPA CENTER. Here she does twice weekly therapy for PT, OT & Speech. She also has just completed her NINTH 3 week Intensive for PT, OT and ST! These intensives are no joke, as they are 5 days per week, for 4 hours per day, for 3 straight weeks! Lily also continues to also do other therapies to assist in her recovery:
- horse therapy with a speech pathologist
- vision therapy
- functional neurology
- cold laser therapy
- Trexo Robotic Walking
- And more!
Through Fundraising and family support, we have been able to take Lily to some INCREDIBLE PLACES to do medical treatment to her her regain skills:
* In September 2022, Lily was given the opportunity to go to Panama City, Panama, to receive STEM CELLS! This was a life changing event that has helped in her long-term recovery. Unfortunately, it is also a very EXPENSIVE therapy…. $16,000 for just the stem cells which is not including the traveling to and from the country of Panama. (This treatment is also not covered by insurance, even though it has shown the greatest SUCCESS for her).
* June 2023, we traveled to Mexico for a month long stay for her NEUROCYTONIX BRAIN TREATMENT. NeuroCytonix. Inc. is a biomedical technology company focused on developing innovative revolutionary treatments for neurodegenerative diseases such as cerebral palsy, stroke, and traumatic brain injuries. Their technology utilizes the combination of magnetic fields and radiofrequency waves to stimulate brain regeneration and restore the broken neural network. Upon being accepted into the cerebral palsy protocol, patients spend approximately 32 days in Monterrey, Mexico. The day after your arrival to Monterrey, the patient will undergo a sedated MRI along with blood work and an EEG. The next day treatment will finally begin for 28 days straight one hour a day in the Cytotron machine. After 28 days of treatment are complete, the patient will undergo one more sedated MRI, blood work and EEG. Most importantly, the patient and family receive data from a tractography, which shows how many neural tracts were present prior to treatment and how many they gained as a result of the 28 days of treatment.
This was the GREATEST TREATMENT we have done for Lily! From this 28 treatment, she has gained/obtained:
- the ability to tall kneel and sit her butt to her heels - Half kneel to stand with assistance
- Use her eye gaze communication device even more proficiently to tell us her needs and wants, AND communicate like a typical kid with her friends and family
- SIGNIFICANTLY LESS muscle spasticity
- The ability to STAND w/ her arms propped on a bench in front of her for 2 & 1/2 minutes!
- Use her VOICE to say: Da, Ma, Enz, Nic, Pa, Nan and so SO MUCH MORE!
This treatments initial cost was $60,000 and through the love and support of family and friends, we were able to do this treatment!
This year the cost is $45,000 for being a returning patient!
Check out these incredible videos of pediatric patients: https://youtu.be/Svzxas26S4w
Lily is the MOST INCREDIBLE LITTLE GIRL❤️…. She is kind, considerate, caring, loving and funny. She loves deeply and laughs whole heartedly! She is a wonderful big sister, amazing friend and the FIERCEST LITTLE WARRIOR! Her journey has taught us so much about LOVE ❤️, LIFE and what is MOST IMPORTANT . She continues to shows us what Strength, Determination and that “NEVER GIVE UP” Attitude can do! She is an INSPIRATION to us all and continues to remind everyone to live in the moment. She is moving mountains, breaking through the "NO's" and showing ALL that she can accomplish.
We have put together this fundraiser to HUMBLY ask for your support in achieving ours and our daughter’s DREAM of walking again!! Anything you can do is truly appreciated and we are so grateful! We know it takes a village to raise children and are so BLESSED with the people around her and our family! Thank you for taking the time to read about our SPECIAL little girl and for showing your continuous love and support! Please feel feel to follow Lily's journey on IG: https://www.instagram.com/lilystrongforliliana?igsh=NDF0dTQwNDZpZXA5&utm_source=qr
Fundraising team: Team fundraiser (2)
Lily Strong
Organizer
Addison, IL
Andre Lima
Team member