Discovering Joy in Today: Nicki & Ganesh’s Story

June 1, 2023

Ganesh Bhandaru

by Nicki Bhandaru, RARE Mom

My name is Nicki Bhandaru, and my son Ganesh has X-ALD. A little over 21 years ago, we were pregnant with our son. The son we had always wanted. We could not wait for him to be born and could not wait to see the person he would become. He was born in 2001 and was perfect in every way. He grew to be an adorable, sweet, kind, and smart boy who was gifted, both academically and athletically. He was the point guard and MVP of his basketball team, and moved up quickly in martial arts. He had a great sense of humor and a lot of friends. It was always a joy to go to parent-teacher conferences because his teachers loved him. He was bright, gentle, and extremely kind. We felt like he could be anything he wanted to be and that he would have a successful, happy life.

When Ganesh was in the 5th grade, I started noticing that he was having some mild reading comprehension issues. By 6th grade, it became clear that something was really changing. His academic performance started to decline, despite intense effort on his part. His handwriting suddenly became very sloppy. He became clumsy and started dropping things and falling. His skin was unnaturally darkening and his body was looking emaciated. He was exhausted and had increased moodiness, which was very unlike him. I noticed that he started to get a lazy eye that had gotten much worse over the past two years. After years of trying to narrow down the cause, we finally took him to a different optometry practice. That doctor sent us to a neuro-optometrist and we were eventually referred to Raleigh Neurology who ordered an MRI. At this point, we had seen several different doctors over 2 years. We finally got an MRI and found out that our sweet little 14-year-old boy had X-Linked Childhood Cerebral Adrenoleukodystrophy.

After consulting with more doctors at Duke, we were told it was too late for him to have a bone marrow transplant and there was effectively no treatment available. The only thing they were able to do was give him steroids for the Adrenal Insufficiency. We also found out that both of our daughters, my mother and I also have ALD. If only I had changed eye doctors earlier or had enough medical knowledge to push for an MRI at an earlier age, maybe things would be different. But, unfortunately, I did not.

All of our lives changed the day we received the phone call from Raleigh Neurology, I was told to call Make-A-Wish, as we did not know how much time we had before Ganesh’s condition would progress even more. We were also told that usually after diagnosis, life expectancy is 6 months to 2 years. Ganesh started high school shortly after his diagnosis and he graduated in a power wheelchair with the assistance of a personal aide. He has since lost much of his vision, his ability to walk and his ability to use his arms and legs. He needs support with all of his daily living activities. We have hired several care-taking aides over the years to help me and my husband with moving, transferring, feeding, dressing him and more.

Life is very different from what we expected, but Ganesh has somehow managed to keep his amazing sense of humor and positive attitude. He hates being dependent on us and others for his daily care, but he makes the best of a bad situation. He wants to live and is just waiting for a cure or treatment. Until that time arrives, he spends time with his two dogs that bring him much joy and happiness. He wants to accomplish a lot in his life. For now, he is working on getting his college degree with the help of his aides for reading and writing, taking it one class at a time.

Note: Ganesh turned 22 in April, and his older sister, Nisha, recently earned her Doctorate in Physical Therapy from Boston University, and presented during a webinar on physical therapy considerations for adrenoleukodystrophy earlier this year.
Nicki originally wrote this for ALD Connect‘s 2022 annual report.

Ganesh and his older sister, Nisha, at her DPT graduation in May 2023

The Bhandaru family at Nisha’s DPT graduation

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