Kelleigh's Cause

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Manlius, NY
Kelleigh's Cause

Raising awareness and finding appropriate treatment for all those affected by arteriovenous malformations (AVMs). As well, that there was no cure.

Provide education and community support for those within the chronic illness/rare disease community. At the age of four, after many unanswered questions regarding the growing discoloration of the right side of her head, ear and neck, Kelleigh was diagnosed with a rare, inoperable, and life threatening birth defect known as arteriovenous malformations (AVMS). Our family was not prepared to hear the

team of highly regarded specialists refer to Kelleigh's AVMS as extensive and affecting all of the major blood vessels of the entire right side of her head and neck, as well as her airway. We were told that she was at risk of hemorrage, severe disfiguration, and congestive heart failure. Since her diagnosis, world renown Vascular Interventional Radiologist Dr. Patricia Burrows has meticulously performed countless hours of highly specialized treatment several times a year in an attempt to control the progression of Kelleigh's birth defect and to keep her out of congestive heart failure while we wait for the medical research to develop the necessary chemotherapy agent to specifically target Kelleigh's disease. The number of procedures Kelleigh has endured are too numerous to count and each time she has been at risk of blindness, paralysis, stroke, and death. In addition to the procedures performed by Dr. Burrows, Kelleigh has had numerous set backs due to infection and pain because of tissue destruction related to the blood vessels causing abnormal or lack of blood flow. At age 6 she required a scalp resection because of the pain caused by dead scalp tissue. At age 7, she had a life threatening reaction to a chemotherapy agent used in an attempt to help control the progression of the abnormal blood vessel growth. She spent the week preceding her First Holy Communion in the ICU. The priest who performed the Annointing of the Sick on that Monday was the same priest who tearfully gave her First Holy Communion in the following Saturday when Kelleigh was given a 2 hour leave of absence from the ICU and joined her classmates at the church. At age 10, the AVMs began to seriously affect her airway and she required a tracheostomy. Another month of school missed. Through all of this Kelleigh has demonstrated amazing Faith, Hope and Courage. Even in her darkest hours she has never given up. She completed her bachelors degree in Psychology and Biology and went on to receive her masters degree in Occupational Therapy at Columbia University. She aspires to build a career where she can assist others as she has been helped. The AVMs continue to progress in and around the base of her skull making it increasingly dangerous to treat her. Knowing what she is up against Kelleigh's main goal is to make a difference in the lives of all people affected by AVMs. Kelleigh’s Cause is determined to stand with her and do everything we can to fund the critically needed AVM research! Please help Kelleigh and our family by donating to Kelleigh's Cause, a nationally recognized 501c3 charity. Every penny donated goes directly to the research. Your help is greatly appreciated. PLEASE DONATE HERE:
http://www.kelleigh.org/donate

For more information about vascular anomalies:
http://kelleigh.org

05/03/2025

“On this journey, I’ve learned it’s the everyday courage, quiet leadership, and deep kindness that makes a difference. This realization made me think back to my confirmation saint, St. Thérèse of Lisieux, whose “Little Way” teaches us that holiness is found not only in great acts, but in small, daily sacrifices and loving deeds. St. Thérèse believed that being close to Christ doesn't require grandeur—it requires simplicity, humility, and love in the ordinary moments of life. Whether it was a prayer said for me during announcements, a home-cooked meal delivered to our door, or a handmade poster welcoming me back to school, those simple acts of kindness—offered quietly, but with love—have shaped my journey and reminded me of Christ’s nearness in everyday life.”

Congratulations to this years winners of the 2025 Gustafson Family Youth Leadership Award, fondly known as Kelleigh’s Cross

03/01/2025

Disabled, chronically ill, … RARE.

This photo is from when I was the Miracle Child for my local hospital in Michigan. By this time, I’d been undergoing surgeries every couple months, trialed a chemotherapy, almost died from said chemotherapy due to increased pressure in my skull, had my vocal cords paralyzed after a surgery, and received my tracheostomy.

I often joke that my more recent friends don’t realize how sick I am because my rare disease journey doesn’t look like it did when I was initially diagnosed. It’s easy to look back and say I was just a sick child.

My journey has changed a lot over the past 28 years. I’ve gone from 3-4 surgeries a year to 1-2 surgeries every couple years. For 6 years now, I’ve been on two chemotherapy agents which have drastically changed the way I’m treated. They of course have their own daily side effects; limb swelling, acne, digestive issues, and some hair loss, but overall the ability to travel, be with friends and family, and establish a career has greatly improved.

Some things will always stay, like going through a flare up after I’m sick, losing my voice at the first sign of post nasal drip, having physical activity limits, and my self esteem taking a hit every time my AVMs swell up, but I wouldn’t be living my beautiful soft life without these medications and my doctors dedication to patient quality of life. I wouldn’t have these medications if it wasn’t for rare disease research and the repurposing of cancer drugs, which makes times like these scary. Yet, Rare Disease Day reminds us that we’re not on these journeys alone and there’s zebras everywhere ♥️

Raising awareness and finding appropriate treatment for all those affected by arteriovenous malformations (AVMs). Provide education and community support for those within the chronic illness/rare disease community.

02/06/2025

Yesterday was another step in the journey! Had a visit with my doctor, and after some careful consideration, we're adjusting the treatment plan for my AVMs. I also had the chance to meet with the incredible Foundation team who are dedicated to helping us fund AVM research. I’m beyond excited about the new opportunities and breakthroughs on the horizon. It's a reminder that progress isn’t always linear, but we’re staying strong and committed to living life every day. Thank you to everyone for your love and support ♥️

Happy Rare Disease Month 🦓

01/12/2025

2024 ended in a whirlwind surrounded by loved ones and our biggest supporters. We held some of our biggest fundraisers and were able to meet our fundraising goals! We’re so excited to see the advancements the research team will make this year. We are so close!!! We hope everyone had a blessed and healthy start to 2025 ♥️🥂

10/09/2024

Do you know the history behind AVM Awareness Month?

We're honored to be considered part of it! Thank you to everyone who works tirelessly to raise awareness about arteriovenous malformations. Your dedication helps shed light on this condition and supports those affected by it. Together, we can continue to spread knowledge and hope ❤️

10/07/2024

🧠❤ October is AVM Awareness Month! ❤🧠

Join us in shining a light on Arteriovenous Malformations (AVMs) and the importance of early detection and education. AVMs can affect anyone, and raising awareness is crucial for better understanding and support.

🌟 At Kelleigh's Cause, this month we're focusing on:

💡 Raising Awareness: Educate the community about AVMs and their impacts.
🔬 Supporting Research: Fund initiatives to improve understanding and treatment options.
🤝 Building a Community: Create a network of support for individuals and families.
🗣 Advocating for Patients: Be a voice for those affected, promoting access to care.
🩺 Encouraging Early Detection: Promote awareness of symptoms for timely diagnosis.

Raise Awareness, Funds for AVM Research, Education, & Community.

07/20/2024

Come One, Come All, Come Make a Difference!!!!
❤️🍫❤️🍫❤️🍫❤️🍫

Raise Awareness, Funds for AVM Research, Education, & Community.

06/23/2024

Hi Everyone,

Thank you all very much for your prayers and support!

Thursday's procedure lasted about 9 hours. Kelleigh did well throughout the procedure and is recovering in true WARRIOR fashion! We are constantly amazed by her WILL to get on with life! We are now en route back to NY for her to rest and recover at home.

I am happy to say that the Giraffe was a hit! Mom forgot that he would have to make the plane ride back to DC eventually! That should be a site....

We once again had the opportunity to meet with the brilliant research team who told Kelleigh that she inspires them every day! Definitely brought tears to mom and dad making us more inspired then ever to raise the funds needed to see this through!
Kelleigh is determined to make a difference in the lives of all those affected by AVMS.

Please consider joining us in person or virtually at this year's
CHOCOLATE CHALLENGE on Saturday July 27th in Syracuse NY!

All money raised goes to the Kelleigh Gustafson Accelerated AVM Research Fund at Boston Children's Hospital!

Please help us make a difference in the lives of all affected by AVMS!

Know someone who truly wants to make a difference....please have them consider our charity!

06/20/2024

Another step in the journey…We arrived in Boston last night and came to the hospital bright and early this morning.

Kelleigh is currently in her procedure which is expected to take 5-6 hours.

We spoke with Dr. Greene last night and are very excited about the incredible progression of the research! Thanks to all of you we are and will continue to make a difference in the lives of all AVM warriors!

We truly appreciate your prayers and support. Another hurdle we will overcome for 2024!

Check out her new bestie! She is either going to love it or think we’ve lost our minds but I had to do it!!!
-Lori

06/17/2024

This year got off to a crazy start and it seems like we are just now catching up! All my health issues from the beginning of the year have been resolved and we were able to to return to Michigan last month to give out the Kelleigh's Cross Scholarship Award. Now we are onto the next adventure, surgery in Boston at the end of this week for a tune up. It's been a little over 3 years since my last surgery and it's all because of my doctors and my chemotherapies.

Hoping to recover quick as our favorite fundraising event the Chocolate Challenge is next month!! Thank you to everyone for always supporting me and this charity's mission to find a cure for AVMs!

04/19/2024

It's officially race season again! We're so excited to be partnering with the Chocolate Pizza Company again to provide the place awards for our finishers!

Just 99 days to go before the Chocolate Challenge!

Check out our place finishers awards... thats right it's chocolate pizza from The Chocolate Pizza Company!!

We'd say it's time to start practicing your chocolate eating skills 🍫🍫🍫

03/01/2024

“Just because you carry it well doesn’t mean it isn’t heavy” - This phrase has been rattling around in my brain the past couple weeks. My rare disease journey has been a long one and lately a really heavy one but with my team in Boston and my loved ones across the country, the load is a lot easier to carry since I’m not doing it alone ♥️

Rare disease day reminds us that though our diseases are rare, our community is large. I’m lucky to have family and friends who support me and Kelleigh’s Cause so that we can connect with my fellow AVM warriors across the world and ease some of the chronic illness burden by funding rare disease research and creating online communities.Each time I meet with the research team, we are 5 steps closer to more reliable and less invasive treatments. I’m extra thankful this year for everyone I have met on this journey, especially my fellow warriors who are never afraid to show their stripes ❤️🦓

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Manlius, NY

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https://www.kelleigh.org/donate

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Our Story

At the age of four, after many unanswered questions regarding the growing discoloration of the right side of my head, ear, and neck, I was diagnosed with a rare, inoperable, and life threatening disease known as arteriovenous malformations (AVMs). My family was not prepared to hear this news. A team of specialists stated this condition was extensive and affected all of the major blood vessels of the entire right side of my head and neck, as well as my airway. We were told that I was at risk of hemorrhage, severe disfiguration, and congestive heart failure. Most importantly, we were told there was no cure. Since my diagnosis, I’ve had countless hours of highly specialized treatment several times a year in an attempt to control the progression of my disease and to keep her out of congestive heart failure while we wait for the medical research to develop the necessary chemotherapy agent to target it. Each treatment puts those with AVMs at risk for blindness, paralysis, stroke, and potentially death. In addition to the procedures, I have had numerous set backs due to infection and pain because of tissue destruction related to the blood vessels causing abnormal or lack of blood flow. At age 6, I required a scalp resection because of the pain caused by dead scalp tissue. At age 7, I had a life threatening reaction to a chemotherapy agent used in an attempt to help control the progression of the abnormal blood vessel growth. At age 10, the AVMs began to seriously affect my airway and I required a tracheostomy. Through all of this, I managed to graduate from college and pursue a master’s degree. The AVMs continue to progress in and around the base of her skull making it increasingly dangerous to treat. Knowing this and the dangers that treating AVMs presents to everyone effected by them, Kelleigh’s Cause was founded. As a charity, we are determined to stand with those effected by this disease and do everything we can to fund AVM research! Our goal is to raise awareness of this disease and funds for its research. As well, we want to create a community where those with AVMs and their families can turn to. PLEASE DONATE HERE: http://www.kelleigh.org/donate For more information about vascular anomalies: http://kelleigh.org