JHHF helped Cole by providing physical and occupational therapy equipment.
At their 20 week anatomy scan, Cameron and Lindsay found out that their baby boy Cole had a vascular ring. The aortic arch that comes out from the top of the heart was wrapped around his trachea and esophagus. Thankfully the cardiologist at Children’s Mercy said this was more common than many people think and it was not life threatening. We would be able to proceed with our original birth plan at St Luke’s and be able to bring Cole home as planned. Cole was born full term on 6/15/2024 at a healthy 7lb 12oz. During his newborn screen, the doctors found that he had a partial cleft palate- something that was NOT detected on any of the previous ultrasounds so it was quite a surprise. After much effort, it was decided that Cole could not breastfeed or take a bottle without completely wiping him out and he started losing weight pretty drastically. At 3 days old, he was transferred to Children’s Mercy in Kansas City to begin to supplement feedings with an Ng tube. He was there for almost three weeks and it was eventually determined that he would not be able to take any feedings orally for the foreseeable future and so a G-tube was placed. Cole will be fed via G-tube until his cleft palate is fixed in the next 18 months-2 years. His vascular ring and ASD will also be closely monitored and could potentially need additional surgeries. Jade’s Helpful Heart foundation has helped the Taylor family in so many ways- from providing feeding supplies for Cole’s G-tube and pump, to physical therapy equipment to make sure he continues to get stronger and stay on track developmentally. We are so thankful for this family!
Jade’s Helpful Heart Foundation offered a helping hand to 16-month-old Christian’s family in the way of organizational and home items.
Christian was born September 25, 2021, at 25 weeks gestational age and only weighed 2 pounds, 1 ounce. His small intestine had a kink at birth, so he endured three surgeries. After the second surgery, he received a temporary colostomy bag as a newborn. Along with the intestinal issues, Christian also had Pulmonary Hypertension in his heart and lungs.
“Christian spent a year in the NICU at St. Louis Children’s Hospital and 4 months at Ranken Jordan Bridge Hospital,” said Mellanie, a single mom of two. “We are so grateful to Ranken for helping him learn how to eat, since he had developed an oral aversion due to only being fed through a tube for so long.”
Jade’s Helpful Heart Foundation provided Christian and his family with four storage containers, two medicine units, a heater, a crib, and a mattress. Julia Nesselhauf (Jade’s mom and Founder of JHHF) provided different supply options, colors, and links to Mellanie so she could choose what worked best for their household needs.
“Christian is the life of the room. He has always been a very happy and joyous little boy. He has found a love for music and loves anyone that shows him attention. We have a lot of support outside of the hospital that has helped us tremendously. I am so grateful for that. Jades Helpful Heart Foundation has made us feel seen and heard. Having the organization and tools for home makes all the difference,” said Mellanie.
Jade’s Helpful Heart Foundation has been hard at work connecting with families and offering support. Recently we provided more than $700 in assistance to Kiante by providing a medical mattress for his bed, incontinence pads, and organizational bins.
Kiante went into cardiac arrest and respiratory failure a few weeks before his first birthday. After roughly 40 minutes of CPR and resuscitation attempts by paramedics, his heart started to beat again. Kiante was then placed on life support. Due to the length of time he went without a pulse and oxygen, his brain took a major hit. He now has an anoxic brain injury, and a list of other medical issues, including cerebral palsy, epilepsy, g-tube dependency, dystonia, infantile spasms, acute respiratory failure, urinary retention, cortical visual impairment, sleep apnea, floppy airway due to poor muscle tone…and the list goes on.
His mom, Tara, says, “Kiante is the strongest baby I know, he has been intubated around 4-5 times each time was a failed attempt for him to breathe on his own, he almost got a trach but the Lord had other plans! He is thriving in so many ways. Although my son is medically complex now, he is the most amazing child. I thank God for him, he has taught me so much about love and the true meaning of it!”
While the journey has been far from easy, Tara credits God for allowing Kiante to come this far.
“It hasn’t been easy, but this is our lives now and I plan to always be his voice his advocate, and his biggest supporter. Thank you to Jade’s Helpful Heart Foundation for all you do and thank you for helping families like mine who still are so overwhelmed about him coming home. I never knew I’d feel so nervous in my life and happy all at the same time. The Foundation and its volunteers have made this easier. I thank God for placing y’all in my life,” said Tara.
Jade’s Helpful Heart Foundation was able to help 3-year-old Noah and his family by providing $2598.21 to help cover medical expenses.
His mom, Rachel, is so grateful for the support that helped them through “another stumbling block in life”. When she was pregnant with Noah, she was told she was a carrier of a Cystic Fibrosis mutation. She had no knowledge of family history but knew her husband’s family did.
Five days after Noah was born, he was diagnosed with Cystic Fibrosis.
“The weeks following were filled with a lot of stress and anxiety adjusting to Noah’s treatment plan. I went back to work after six weeks of maternity leave. Two weeks later Noah became ill and almost died,” recalls Rachel. “He contracted adenovirus, developed pneumonia, and went into respiratory failure. This was Noah’s first trip to the hospital. He was in intensive care for six weeks and was on life support half of that time.”
Fast forward and Noah received another diagnosis during a different hospitalization—asthma. Between rhinovirus, parainfluenza, RSV multiple times, and the management needed for Cystic Fibrosis and Asthma, Noah has been through a lot, and so have his parents. Due to all the sickness going around, Rachel pulled Noah temporarily from preschool to keep him well.
“My baby boy is a fighter and will get through whatever life throws his way. As a chronic illness mom, I need to have my head on straight to make good choices and take care of my family. If I am not okay, then the whole ship sinks. We thank Jade’s Helpful Heart Foundation from the bottom of our hearts for all you’ve done to help us through these unpredictable health complications,” said Rachel.
Click here to donate to Jade’s Helpful Heart Foundation so we can continue to help families like Noah’s feel less alone in their struggles.
Jade’s Helpful Heart Foundation recently awarded a local family with $5,000 to put towards their mounting medical bills.
When Kourtney Hardy of Farmington, Missouri was pregnant with her daughter, Brynlee, everything seemed to be right on target. Aside from being diagnosed with gestational diabetes in the second trimester, she anticipated her baby would be healthy the day she was born.
That all changed when Brynlee was two weeks old. She woke up in the middle of the night screaming and had a fever of 102. Kourtney and her husband Ryan rushed their daughter to St. Louis Children’s Hospital where a gamut of testing was done. The results showed Brynlee was septic with a UTI. She was admitted into the NICU.
After undergoing more tests, it was determined Brynlee had Grade 5 Vesicoureteral reflux (VUR), a life-threatening condition where there is a backward flow of urine from the bladder into the kidneys. After multiple hospitalizations and months of maintenance at home with a home health care company and a PICC line, the cost of care was getting overwhelming.
Brynlee had a vesicostomy, which is a temporary fix that creates a surgical opening in the bladder to the outside of the body and allows urine to drain, preventing urinary tract infections or additional damage to the kidneys. She’ll undergo full corrective surgery of ureteral reimplantation when she is big enough to undergo such an invasive surgery.
Jade’s Helpful Heart Foundation strives to help medically complex children like Brynlee and their families gain their ground and feel supported every step of the way.
A Missouri family is breathing a sigh of relief thanks to a donation from Jade’s Helpful Heart Foundation.
Rae is a 10 month old girl born with Trisomy 21, a chromosomal anomaly, also known as Down syndrome. She was also born with a heart defect. Surgery left Rae with Pulmonary Hypertension, requiring oxygen throughout the day. Prior to receiving a donated oxygen tube holder from the Foundation, Rae’s mom had been carrying the heavy oxygen tanks.
“Having the attachment donated through Jade’s Helpful Heart Foundation has been a Godsend! Being a single mom with multiple children also with special needs, I often need my hands free and this allows Rae to breathe comfortably and have her oxygen next to her at all times. We thank you so much for your kindness and friendship!”
Rae spent the first 46 days of her life in the NICU, born at 31 weeks, her little body, only 3 lbs.15 oz. You can follow Rae’s journey on Facebook: RAE
This is the first example of many to come about how we plan to improve the lives of families with medically complex children. We hope this helps Rae and her mom breathe a little easier.
Christmas came in July for Ranken Jordan Pediatric Bridge Hospital thanks to Jade's Helpful Heart Foundation.
After spending 8 months rehabilitating and being treated at Ranken, Jade was able to come home to our family in June 1, 2017.
It was surreal to return back and deliver adaptive toys to families who are currently walking in our shoes
Christmas came in July for Ranken Jordan Pediatric Bridge Hospital thanks to Jade's Helpful Heart Foundation.
After spending 8 months rehabilitating and being treated at Ranken, Jade was able to come home to our family in June 1, 2017.
It was surreal to return back and deliver adaptive toys to families who are currently walking in our shoes and wondering if their child will ever be able to have fun with toys and engage with them in a unique way. JHHF is making that dream a reality.
Thanks to the $2,000 raised for Jade's birthday in February, we've adapted and delivered the following toys to Ranken and its well-deserving families:
Switch adapted Dice roller
2 digital doorbells
3 switch adapted bubble machines
Four switch adapted toys
A switch adapted art center
8 adapted switches
8 zvibes
Dees chickadee items
12 pop-it balls
8 Alexa controlled lightbulbs
2 Echo dots
5 packages of 6 art dot pens
6 packages of 5 easy holds
8 wheelchair covers
30 adapted scissors
Thanks to everyone who made this possible!
Jade you are amazing!!! Here she is donating to Ranken Jordan Pediatric Bridge Hospital! She donated adapted toys, switches, wheelchair blankets, weighted blankets, wheelchair ponchos, wheelchair cup/phone holders, easy grippers, echo dots, projector, and seat cushions all with the $2000 she raised on her birthday! Thank you to everyone
Jade you are amazing!!! Here she is donating to Ranken Jordan Pediatric Bridge Hospital! She donated adapted toys, switches, wheelchair blankets, weighted blankets, wheelchair ponchos, wheelchair cup/phone holders, easy grippers, echo dots, projector, and seat cushions all with the $2000 she raised on her birthday! Thank you to everyone that donated to her cause with Jade's Helpful Heart Foundation!
Thank you to her aunt Kaylie Nunn Kloeppel for hand crocheting blankets!
Thank you to Dianne Lassiter for making g-button covers!
This week we dropped off all the gifts bought from the donations given on Jade’s birthday to Ranken Jordan! We want to keep this tradition going every year! These gifts are for current patients at Ranken. If you didn’t know, Jade was once a patient at Ranken for 8 months and this hospital was like a second home to us! The staff there are
This week we dropped off all the gifts bought from the donations given on Jade’s birthday to Ranken Jordan! We want to keep this tradition going every year! These gifts are for current patients at Ranken. If you didn’t know, Jade was once a patient at Ranken for 8 months and this hospital was like a second home to us! The staff there are amazing and the children are miracles! Thank you to everyone that donated to make this possible! We donated right at $2,000 worth of items!