Fight Interstitial Lung Disease with Lennon

Meet James, Gloria, and their three miracle babies, Jameson (3), Lennon and Theo (11 months). After a long journey with secondary infertility, Gloria and James were blessed with twins. However, when Lennon and Theo were born prematurely in July 2023, life changed completely. For the past 11 months, the Vang family has been fighting for better care and concrete answers for Lennon, who was diagnosed at birth with a rare congenital lung disease called child Interstitial Lung Disease (chILD).

chILD affects less than 1 in a million children and is an umbrella term for lung diseases that cause progressive and irreversible scarring of lung tissue, making it hard to breathe and receive enough oxygen. There is currently no cure and chILD is still widely unknown and under-researched due to lack of medical funding. ILD patients like Lennon require oxygen therapy to support their lungs and help them breathe. At best, the lung disease progresses slowly. At worst, it progresses rapidly and is fatal unless a lung transplant is performed. Lennon’s specific type of ILD is still unknown even though he spent 54 days in the NICU, where he received extensive testing and has been followed by several specialists as an inpatient and outpatient. Lennon’s only current treatment is supportive oxygen therapy which he still needs 100 percent of the time. Without it, his physical health and mental status decline very quickly.

Gloria and James have been told from day one that Lennon’s case is “mysterious” and “atypical,” making it difficult for his care team to know what is causing his chronic conditions, feeding difficulties, and arising health issues that stem from his lung disease. Lennon’s care team has taken a wait-and-see approach and suggested the only thing that can be done for him is supportive care (oxygen therapy) to keep him comfortable. This isn’t enough for Gloria and James. There is more that can be done and more life for Lennon to experience. Gloria and James have sought multiple opinions from different specialists about Lennon’s lung disease with no luck, but they will not stop until they find a doctor who has answers and more knowledge about chILD. We know that Lennon’s lung disease began in the womb, but we do not know which type of lung disease, how severe it is, how long he will live, or how to best support him and increase his quality of life.

After a long 6-month wait, Lennon will finally be seen by a child Interstitial Lung Disease specialist this August. He will be admitted as an inpatient at UPMC Children’s Hospital of Pittsburgh, where he will undergo extensive testing that will hopefully confirm a diagnosis of Interstitial Lung Disease and the specific type. The Vang family will be traveling from Michigan to Pittsburgh by car, as Lennon requires medical equipment, oxygen tanks, and an oxygen concentrator among other necessities. They plan to stay in Pittsburgh for 4 days before driving back home, but are currently on a waitlist for a room at the Ronald McDonald House. Because rooms cannot be reserved in advance, Gloria and James must book a hotel in advance in the case a room does not open up, but also be prepared to pay the hotel fee should a room become available at the Ronald McDonald House.

After almost a year of navigating a medically complex life with twins and a toddler, Gloria and James have suffered ongoing financial hardship and recognize they cannot do this on their own. While they continue to pray and believe for healing, they are also aware that Lennon may always require medical attention and special care whether it be inpatient or outpatient. The Vang family is in need of our help to sustain Lennon’s requirement for longterm medical care as well as some of their most basic needs. Please consider sharing this link with your community and giving in any way you can, whether it be a monetary gift or a prayer to uplift the family for the long journey ahead of them. Thank you for extending your love, generosity and support to the Vang family in their efforts to pursue lifesaving care for their baby boy Lennon. God bless you all.

LENNON’S STORY:

Lennon and Theo Vang were born premature at 34 weeks after Lennon’s water broke, on July 10, 2023. After a successful delivery, both boys were taken straight to the NICU to be treated for Premature Lung Disease. While Theo responded well to CPAP and successfully weaned off breath support within a week, Lennon required much more support.

At birth, Lennon presented with tachypnea and severe retractions which meant his little heart and lungs were constantly working harder than normal to breathe. A normal breathing rate for newborns is anywhere between 40-60 breaths per minute, and Lennon’s consistent breath rate was anywhere between 80-100 breaths per minute. From his first day until now, breathing for Lennon is like running a marathon all day, every day. After showing no progress on breathing treatments like CPAP or High Flow, Lennon’s care team made the decision to intubate him. Lennon’s lungs were in distress and he could not breathe well on his own, so he remained on a ventilator that breathed for him and received surfactant medication to keep his lungs from collapsing. Lennon went on to receive a myriad of medications and had EKGs, X-Rays, CT Scans, blood work, and a number of tubes for feeding and oxygen therapy.

Lennon’s case has been labeled atypical from the very beginning by his care team, which quickly grew into a large team of specialists from pulmonology, cardiology, gastroenterology, genetics, neurology, ENT, peds, dietetics, occupational therapy, physical therapy, feeding therapy, etc. The Beaumont NICU care team exhausted their efforts trying to find the root cause of Lennon’s Premature Lung Disease, which over the weeks evolved into Chronic Lung Disease, and then into unknown Interstitial Lung Disease via CT scan findings. Every single provider that has ever seen Lennon reports that they do not know what else to do for him. There have been no comparable cases like Lennon’s, no proven step-by-step treatments, and no way of knowing the rate of progress or outcome.

After 40+ days in the NICU with very little progress and no concrete answers, Lennon’s parents pushed for transfer of care to a different hospital. Ultimately, Lennon’s care team agreed to transfer him to a higher level NICU for more extensive testing along with g-tube surgery and recovery, which was Lennon’s ticket out of the NICU. Lennon had a feeding tube placed in his stomach to receive all of his feeds. He has never been cleared to drink or eat by mouth due to his tachypnea, which puts him at high risk of aspiration.

After 54 days, Lennon finally came home on 0.5L continuous oxygen support and 100 percent g-tube feeds. The hope of his medical care team was that Lennon would begin to thrive and make more progress at home, where he could be surrounded by his brothers and parents. Since discharge, Lennon has had a life full of appointments with his care team as an outpatient. Every week, Lennon and his family spend more time in the hospital or pediatrician’s office than they do at home for ongoing and evolving health issues that stem from Lennon’s lung disease. Lennon’s parents, Gloria and James, have had to adjust their work schedules to accommodate this drastic shift which has caused them to struggle financially each month. While James still works full-time, Gloria had to drop to part-time work to care for Lennon, Theo, and their big brother Jameson.

Gloria and James have not stopped advocating for Lennon, and they continue to pursue answers with different pulmonologists. Since Lennon's NICU discharge, they have sought a second opinion from C.S. Mott at University of Michigan only to receive a different diagnosis and more confusion. After much research, Gloria and James discovered the Children’s Interstitial Lung Disease Foundation where they got in contact with a child Interstitial Lung Disease specialist named Dr. Geoffrey Kurland. When Lennon was 6 months old, Gloria secured the first available appointment with Dr. Kurland at UPMC Children’s Hospital of Pittsburgh for August 7, 2024. Lennon will be one year old by the time he finally sees Dr. Kurland.

Lennon will be admitted at UPMC as an inpatient and get a full work up with more extensive testing. He will be seen by pulmonology, genetics, and gastroenterology among other specialties. The goal of this testing is to hopefully confirm a diagnosis of Interstitial Lung Disease (ILD) along with the specific type. While there is no cure, knowing exactly what type of lung disease he has will help to determine a more effective treatment plan for Lennon, give him better quality of life, and provide Gloria and James with the answers and reassurance they have been looking for. The Vang family has put a lot of their hope into UPMC and are optimistic about the care Lennon will receive under Dr. Kurland’s guidance.

To date, Lennon has been diagnosed with tachypnea, premature lung disease, chronic lung disease, pneumonia, BPD, Interstitial Lung Disease, developmental delay, low tone, feeding difficulties, severe oral aversion, severe GERD, failure to thrive, and reactive airway disease (asthma). The list of conditions and unanswered questions are ongoing, but Gloria and James will keep advocating for Lennon until more is understood about Lennon’s lung disease and unique medical conditions.

In the last few months, Lennon has been hospitalized twice for different medical reasons and diagnosed with new conditions on top of his existing lung disease. This is just the reality of life with this debilitating disease for Lennon and his entire family. Your monetary support and continued prayers will help Gloria and James in times like this. Most of all, your contributions will champion them in their efforts to keep Lennon well, and give him a full life by pursuing every possible angle with doctors across multiple specialties. No gift is too small, and we thank you deeply for your generosity and kindness toward the Vang family.