Understanding AVM: A Mother's Journey with AV Malformation Warrior

I had the opportunity to learn about AV Malformation (AVM), a rare medical condition affecting thousands worldwide yet poorly understood by the general public. Shoneez Ganie, founder of AV Malformation Warrior, who shared her personal journey as the mother of Yazdaan, a 15-year-old boy living with this condition.

Arteriovenous malformation (AVM) is a condition where blood vessels form abnormal connections between arteries and veins. In Yazdaan's case, the condition was present from birth, initially appearing as a red mark resembling a strawberry. Despite multiple surgeries starting when he was just eight months old, Yazdaan's AVM has continued to return, causing significant challenges throughout his life.

Yazdaan's journey with AVM is made more complex by his additional diagnoses of autism and a heart condition. Shoneez described the heartbreaking reality of raising a child with AVM:

He cannot run or play sports due to the risk of injury.

He experiences constant pain and swelling.

The condition can potentially affect other organs, including the brain and heart.

He requires ongoing medical treatment, including chemotherapy with " bleomycin injections".

Despite these challenges, Shoneez described her son as "the most humbled, the most patient person" who "wakes up with a smile every day." Currently, Yazdaan is temporarily using a wheelchair after breaking his ankle in three places last year, which has further complicated his condition and prevented him from attending school.

Yazdaan's artistic talents became the foundation for the AV Malformation Warrior organization. Yazdaan express himself through art. Shoneez transformed his artwork into various products including colouring books, pencil cases, mugs, puzzles, and bags that make up what they call the "Warrior Hamper."

These hampers are delivered to children in hospitals, providing comfort and support during difficult times. The organization also aims to create awareness, establish support groups, and educate the public about AVM.

One significant challenge Shoneez highlighted is the lack of awareness about AVM, even among healthcare professionals. She often finds herself explaining her son's condition to medical staff who are unfamiliar with it. This experience has motivated her to advocate for better training and education about AVM within the healthcare system.

Raising a child with complex medical needs while also parenting another child presents significant emotional challenges. Shoneez candidly shared her feelings of guilt when her older son sometimes receives less attention due to Yazdaan's medical needs. However, this journey has shaped her into a more patient and humble person with a desire to help others facing similar challenges.

Shoneez's vision for AV Malformation Warrior includes:

School outreach programs to help children understand what their peers with AVM are experiencing.

Hospital visits to support affected children and families.

Distribution of "Warrior Hampers" to children undergoing treatment.

Promoting the "magical shoe" featuring Yazdaan's artwork (currently seeking partnerships with shoe manufacturers)

For those interested in supporting AV Malformation Warrior or connecting with Shoneez:

Contact her directly at 082-526-8995

Visit their Facebook page "Little Autistic Geniuses"

Follow Yazdaan on Instagram at "Ali Yazdaan"

Shoneez's parting advice to parents facing a new AVM diagnosis is powerful: "Focus on the positivity. Take your pain and channel it into something beautiful... Don't give up. I do believe in miracles."

This inspiring story reminds us that awareness is the first step toward understanding. If you or someone you know experiences unusual symptoms, consulting with healthcare professionals promptly is crucial, especially when dealing with conditions like AVM.

Click on the video to listen to the interview

Presenter : Jasnine Roberts

Producer: Lydia M