My son, E., was born with a rare genetic disorder called Tuberous Sclerosis Complex. Basically, this disorder causes tumors to grow on every organ in the body: eyes, heart, liver, brain, skin, teeth, lungs, etc. Currently, he has dozens of tumors in his brain and two on his heart. The tumors in his brain cause developmental delay and seizures.
I remember the first time I held him in my arms: I looked upon this beautiful baby boy with all the hope a new mother has, felt his delicate skin and kissed his tiny forehead. It was at that time he had his first seizure. That was over four years ago.
These past four years have been incredible… and trying. E. didn’t sit-up by himself until he was about a year old, didn’t walk until he was 19 months old, didn’t say his first word until he was nearly 3 years old. His behavioral problems have been extremely difficult to understand, handle and cope with. But, I wouldn’t trade one single moment of those trials because E. is an incredible person! He has taught me more about love and more about life in his short four years than I have learned by myself in the previous twenty-four! Because of E. and all the medical treatments he has, I’ve been forced to learn and become educated about foods, drugs, therapies – areas I never thought I’d ever have to know about. For most parents, they birth their child and the hardest thing they ever deal with is a couple ear infections and maybe the flu. For me and my husband, we have much more to think about.
When E. was three a SEGA or Subependymal Giant Cell Astrocytoma was discovered in his brain. This particular tumor is very large and usually slow growing but it can cause problems because it may grow so large as to block the flow of cerebral spinal fluid causing increased pressure within the head and enlargement of the fluid-filled ventricles, resulting in a condition known as hydrocephalus. The rate of growth of E.’s SEGA was much more rapid than expected and we were told that E. would need to begin chemotherapy within the next six months to stop the growth of that SEGA.
I immediately went to work learning about chemotherapy and several other therapies available for SEGA’s – unfortunately there are only two options: chemotherapy or brain surgery. Those options were simply not okay with me. I knew there must be alternate options.
I started learning about fruits, vegetables and grains. I learned that green leafy vegetables are nutritional powerhouses! They are rich in minerals, vitamins and phytonutrients, Fruits and vegetables help protect the body from chronic diseases, ward off depression and improve mood, manage blood pressure, regulate cell reproduction and growth, keep teeth and bones healthy and strong and fight off diseases and cancers, just to name a few benefits! I started packing fresh fruits and vegetables into my families diet. I finely chop up at least 10 vegetables into a veggie blend and add this to nearly every dish I make: scrambled eggs, pastas, salads, sandwiches, casseroles, potato dishes, etc.
Since incorporating this veggie blend into my families diet I’ve seen numerous benefits! We all have more energy and less illnesses, we all sleep better at night, my husband’s blood pressure has decreased, my rheumatoid arthritis has nearly gone away, and best of all, E. hasn’t had a seizure in nearly two months! Being seizure free is a first for this family! At his last check-up almost a year ago, the SEGA had stopped growing.
My friend, Moriah, and I are VSC’s for a site in Stevensville, Montana. Weekly I receive the paychecks of the heart from thankful volunteers and participants! Our site has trained VSC’s and their back-up’s for over five other sites in our valley. Hundreds of people have benefited from Bountiful Baskets! Daily I’m thankful for the quality and quantity of produce my family receives! Words cannot express that gratitude and deep appreciation I have for Sally and Tanya at Bountiful Baskets for all their hard work and dedication. Without Bountiful Baskets Food Co-op, I’m certain this family would be struggling through the trials of having a four-year-old going through chemotherapy.
From the bottom of my heart: Thank You!
I have a friend in Kansas whose daughter has TSC also. A had at least 1 brain surgery before she turned one. My heart breaks for them every time my friend shares stories of A’s headbanging or self-harming. She’s 8 now and is able to speak a little, but the TSC has left her with autism and other difficulties. I know that my friend has tried many things, but I will share your story with her and maybe they can find some relief for beautiful A. Thanks.
This sounds so intereting. My daughter has LGS a multi seizure disorder. She in currently being tube fed for most of her calories. I would love more information as well on your plan.
I have a son with petit mal seizures and have tried nearly everything out there. I would like more info on your veggies–are they finely chopped or liquified, how long do they last in the fridge? Do you have other favorite veggies than the kale? Thanks for your story, I hope you have continued success.
Sunny, for my veggie blend, I just take whatever we get in our baskets (and usually a couple more from the store) my goal is 10 total vegetables – not anything strong like onion or green pepper. However, I’m not a big fan of brussel sprouts, but always put some in my blend. This week we were traveling and I was unable to get a basket so here’s what I scrounged up from the store: carrots, celery, brussel sprouts, turnip, yam, kale, broccoli and spinach (I know, this is not 10, but I didn’t want to spend a fortune at the store). Just take like 1 of each or a hand full (brussel sprouts, broccoli) and I ALWAYS add kale because it is SO SUPER GOOD FOR YOU! I take my food processor and chop each veggie up while it is raw. Then put everything in a big bowl with a lid and shake it up to mix it. Put it in every single thing you make. Let me know if you want more info, I’d be happy to share! Also, are you on the TS alliance facebook page? If so, please look me up, I’d love to chat!
That’s so funny that you shy away from the strong flavors and I gravitate toward them! I do kind of a “base” of onions, garlic, celery and carrot, and pretty much everything I cook starts with that unless it has tomatoes and then it doesn’t get the carrots!
sarah, my four kids all have tsc too. i would love if you could share your vegetable blend recipe!!!
So beautiful Sarah- Thank you for sharing and good luck to your family!