The Kelley's 2023

Korey, Julie, Amelia, Lila

Welcome to Lila's Fund

Our Mission

Making a Difference

Since our establishment in 2023, we have dedicated ourselves to supporting families in need. Our unwavering commitment to providing essential items and monetary donations to those at Ronald McDonald House Charities and C.S. Mott Children's Hospital Congenital Heart Center is what drives us. Lila's Fund wants to help make the unbearable bearable by spreading Love, Hope & Support.

Lila's Fund is dedicated to providing Love, Hope & Support to families staying at The Ronald McDonald House Charities in the form of gift cards. Along with providing gift cards, Lila's Fund also assist families and patients at C.S Mott Children's Hospital by making monetary donations and donating essential wish list items

"I'd go hungry, I'd go black and blue, I'd go crawling down the avenue, Know there's nothing that I wouldn't do, To make you feel my love" -Adele

Our Impact!

We are thrilled to announce the success of our 1st annual golf outing and Lila’s swaddle drive! Together, we donated $5,500, 214 swaddles, and 135 pencil pouches to families staying at Ronald McDonald House Charities Ann Arbor and C.S. Mott Children's Hospital.

Impact of Your Contributions

$2,500 will be allocated to RMHC in Lila’s fund, specifically to provide gift cards for families.

$2,000 went to support the Cups of Kindness program at C.S Mott Congenital Heart Center. This contribution supplies the family lounges with fresh coffee, tea and hot coco.

$500 to Physical Therapy. Lila had the best support from Miss Kate in PT. We love you Kate (from PT)!!!

$500 to the neurology Department in support of a friend experiencing this journey.

Swaddles

With your help, we collected 214 swaddles. These items will provide warmth and comfort to newborns and infants.

Pencil Pouches

We gathered 135 pencil pouches. These will be distributed to parents to place in their child’s Heart Guide Book. I found these items very helpful in documenting important information pertaining to Lila’s health.

Gratitude to Our Supporters

Thank You for your unwavering commitment and kindness. Your contributions have made a tangible impact, and your support continues to inspire us to work tirelessly towards our goals.

Keeping Lila's Legacy Alive

Donate Today!

Let's work together to provide love, hope, and support to families taking care of their hospitalized child. By donating $23 monthly, you will receive a Lila's Fund Tumbler as a token of appreciation. We chose twenty three because it's the average stay for families at The Ronald McDonald House.

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Lila's Gifts of Love & Hope

Caring for Lila in the hospital for six months was a challenging experience. I found the fortitude to persevere through this journey by relying on a few basic items that are easily overlooked. These items include coffee and a warm blanket to wrap myself in.

Lila's Hug of Hope

Sponsor a Hug of Hope Blanket

Donate to the Hug of Hope Fund

Cups of Kindness. Lila's Fund has partnered with SAP Reality to provide Keurig coffee machines, coffee, and tea to the family lounges at C.S. Mott Congenital Heart Center. This is our way of extending comfort and support to families during a difficult time.

Donate supplies for Cups of Kindness

Donate to the Cups of Kindness Fund

Lila's Swaddle Drive. Every baby deserves to look cute while in the hospital. That's why we're collecting new swaddle blankets to give to C.S. Mott Children's Hospital.

Donate a new swaddle blanket

Donate to Lila's Swaddle Fund

Learn More

Donate a Wish List Item

*All wish list items will be donated to Ronald McDonald House & C.S. Mott Children's Hospital*

Meet Lila June Kelley

5/13/23 - 11/5/23

February 6, 2023, at our 20- week ultrasound we found out we were having another little girl! But not just any girl a special heart warrior girl! Lila was diagnosed with Mosaic Trisomy 16 which is a very rare chromosome defect where only some of the 16th chromosome has 3 copies (1%-1.5% of pregnancies). With that we were not sure what this was going to effect, I guess you could say Lila would show what it would affect. Lila also had a very complex Congenital Heart Defect (CHD): Pulmonary Atresia, Right Aortic Arch, Complete AVSD, Intracardiac TAPVR, Heterotaxy, Dextro-Transposition of the Great Arteries, and Bilateral SVC.

May 13,2023, at 35 weeks old Lila’s journey started. Lila spent the first month of her life in the NICU at CS Mott Children's Hospital. Our girl hit her goal weight of 4lbs 8oz and she was ready for her first procedure; stenting her PDA (patent ductus arteriosus). This was done in a Cath lab and was an “easy” procedure. During the procedure Lila’s vessel spasms and she had to go into emergency open chest surgery to place a stent to connect the aorta to her pulmonary artery. Despite a minor brain hemorrhage, Lila recovered very well and before we knew it, we were getting discharged, so our girl can grow a bit more before she came back for her first of many open-heart surgery to hopefully do a full repair of her heart.

Lila's Heart

Normal Heart

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Lila June Kelley

3lbs 8oz 15"

Discharge Day

July 10, 2023

July 27th,2023, Lila was not acting like herself. We knew something was wrong and before we knew it, we were in the ambulance heading back to the PCTU (pediatric cardiothoracic intensive care unit) at CS Motts Children's Hospital. Come to find out she had the rhinovirus and while in the hospital we found that she had a very rare Morgagni diaphragmic hernia along with her intestines being malrotation. Since this time around was unexpected, we did not have housing in place, with open arms the Ronald McDonald House Charites (RMHC) Ann Arbor welcomed us into their home. We could go on for days talking about how amazing the RMHC are!

Normal

Lila's

1st Emergency Room visit

August 13th, 2023, We are still at CS Mott Children's Hospital recovering from the rhinovirus when Lila went into respiratory failure and had to be intubated. Due to inadequate blood flow to the brain Lila was diagnosed with cerebral hypoxia which led to a stroke and a series of seizures. Lila recovered very well from her stroke we have not noticed anything that will be life altering but, she will have developmental delays. Then the rhinovirus hit again…..so back on BIPAP and letting the virus run its course.

August 16,2023

August 27,2023

September 15, 2023, Lila’s right lung collapsed. Lila’s intestines were so far in her chest cavity that her right lung collapsed, and we knew we couldn’t push the surgery off any longer. We were hoping we could wait until she was bigger and more stable from a respiratory standpoint. We know with her CHD and respiratory status that this surgery was going to be a very high-risk procedure. Lila went into surgery and did very well during the procedure and we thought we were on the road to recovery and hopefully on our way home

September 26, 2023, Lila is still intubated and very unstable from a pulmonary vascular standpoint. She is sedated and paralyzed hoping that will give her time to rest and give the doctors time to figure out what exactly is going on with her. We do know that she has pulmonary hypertension but, with being a shunt dependent patient it’s hard to treat since her blood is “free flowing” through her pulmonary artery. So right now, we have multiple teams working to find out what is causing Lila respiratory issues, and what needs to be done to get her in a stable condition.
September 29, 2023, Lila was put on ECMO (extracorporeal membrane oxygenation) a form of life support that does the work of the heart and lungs. The ECMO machine pumps and oxygenates her blood outside of her body, allowing her heart and lungs to rest.

June 30, 2023

July 9, 2023

October 3, 2023, Lila's team decided to up size Lila’s shunt to hopefully increase her pulmonary blood flow to overcome her pulmonary hypertension (open chest procedure). Lila did great during surgery and was able to come off ECMO after surgery. Unfortunately she was not recovering well and was put back on ECMO. During a series of test, we found out that Lila’s blood vessels in her lungs are not functioning as they should which is leading to her poor respiratory status. We are hoping that she just needs to rest and recover from her surgery. There is no intervention to fix her lungs and we may have to make a decision no parent should ever have to make. We cannot have Lila living on a machine as that is not the quality of life, we want for her. We are very hopeful that Lila will recover from all of this and grow up to live a very long life.
October 10, 2023, Lila is off ECMO! She is doing very good so far. She is still on the ventilator, as that will be a challenge to get her off of that. We will be taking things very slow to make sure she makes a full recovery.
October 20, 2023, Lila was taken off the ventilator! I got to hold my girl finally!!! She was doing good for a few hours and then her oxygen saturations started to drop again, and she just seemed very restless and uncomfortable so back on the ventilator she went.

October 24, 2023, Lila had a rough 24hrs. After getting an echo of her heart we determined that her shunt was not getting proper blood flow through it, in return her lungs were not getting proper blood flow as well. Lila went urgently to the Cath lab to determine the status of her shunt. The doctors found her shunt had a kink in it that was restricting blood flow so, they ended up stenting the shunt open. She has been recovering well with just a few episodes of lower oxygen saturations. So, we will let her rest and recover and look at getting her off the ventilator next week.
November 1st, 2023, Lila was diagnosed with Airway Malacia. Airway Malacia allows the affected portion of the airway to collapse. Along with Airway Malacia she also was diagnosed with Bronchus Suis, which is an anomaly in which the right upper lobe and its bronchus originate in the trachea. As we look for interventions to try and fix this problem, Lila was not showing signs of improvement, and it was looking like the only way for her to come home was on a home ventilator and tracheostomy, unfortunately Lila was not a candidate for a tracheostomy. Lila is scheduled to for a CT scan on Wednesday (Nov 8th) to see if she will be a candidate to stent her airway.
November 5th, 2023
Lila passed away peacefully in our arms.

Never in a million years I would have thought that I would be taking care of my own critically ill child. I am beyond grateful for having a HUGE support system during this difficult time. I want to say THANK YOU to everyone who has helped my family through, thoughts, prayers, calling or texting, helping with Amelia, bringing us food, monetary donations, visiting me while I’m away from my family to keep me sane, and the list goes on THANK YOU!

THANK YOU to C.S Mott Children’s hospital for doing everything in their power to give Lila the best shot at life, along with the nurses and doctors who cared for Lila in the most loving way.
THANK YOU to Ronald McDonald House Charities of Ann Arbor for the generosity to let us call their home our home while we cared for Lila.

THANK YOU to my employer Pfizer for allowing me to sept away from work to care for Lila, along with all the hard work and dedication put into making life saving medicine that Lila needed.