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Lennon’s Story and why I raise awareness for organ donation

It’s April and that means it’s Organ Donation Awareness Month. One month to talk about donating organs, tissues or eyes to save lives.

I have always been an organ donor but not really considering the impact I could have in giving the life to someone else. One person has the potential to save 8 other lives and help an additional 50 people.

So who is Lennon and why does this all matter?

Lennon is my youngest son (now a whopping 13 years of age) but we didn’t always know he would get this far.

Lennon was born in 2003 and lived with an undiagnosed rare genetic disorder for 4 years. And one might wonder how this was undiagnosed for so long, and the simple and yet complex answer is that since it is rare, there is little data in what you would call mainstream medical information.
But once we had this diagnoses, some damage to his system had already been done. He was delayed in several areas of development (physically and mentally) but what was more important to us was to know how to help him, manage and care for him.

Here’s what Urea Cycle Disorder does in short:

Because the individual is missing the enzymes to remove ammonia from the blood stream and this will lead to hyper-ammonia episodes. You can read more about UCD’s right here: National Urea Cycle Foundation.

Within a year of learning to manage his genetic disorder through a strict diet of limited protein, added amino acid formula’s and swallowing 18 pills a day, we were unable to keep it under control.

His geneticist recommended a liver transplant, an alternative way to manage the urea cycle disorder.

In all the decisions I have had to make in my life, this was by far the most difficult and challenging and a lot of our questions couldn’t be answered. And we made the choice to move forward despite the risks. It is without a shadow of a doubt that without this, the urea cycle disorder would have eventually taken his life.

November 2008, at the age of 5, Lennon received 2 liver transplants 3 days apart. Crazy! And the months that followed were hard because his recovery was not just about the organ transplant, but about a collapsed lung, infections left and right, ascites in his abdomen.

A fight like no other!

He spent several weeks on the breathing tube fighting for his life – and we on several occasions we had the doctors tell us they were doing everything they could do, medically. The rest was up to him and the higher power!

Now I am not going to bore you with all the details, you can read about them in Lennon Steps. But I will add because life is crazy and a miracle all at the same time, he received a third liver transplant in 2011.

His recovery was nothing like the first. In fact, it was a breeze. We were home within 2 months and started living. Actually living.

  • He was started to eat and eventually we ditched the feeding tube.
  • He started to grow and we had to buy new clothes.
  • He started to learn and even retain information.
  • There were laughter and smiles all day long.
  • There were hugs and I love yous.

I don’t have to tell you how precious or amazing life is.

What I do want to tell you is that organ donation is a true gift and the only way for me to ever return this gift is by being an organ donor.
And encourage you to be one too.

You can make the pledge right here on this website: orgondonor.gov

In addition, I am donating 15% of my income in April to Children’s Organ Transplant Association.

So if you decided to work with me, or purchase from Colorful Life or Handmade Life (Three Times Chaos) – any which way there will be a donation to support families in their own journey of organ donation.

What can you do?

Become an organ donor!