The Malfara Family

When Morgan was 10 weeks old, he started to demonstrate symptoms of colic, and our doctor simply suggested different holistic remedies we could try to alleviate his discomfort. However, as time went on his pain got worse, his round-the-clock screaming episodes escalated, and he failed to meet his 4-month developmental milestones. Morgan was evaluated by a pediatric gastroenterologist, and diagnosed with severe Reflux. We began a regimen of medications that seemed to help, however, by 6 months of age when Morgan had still not met his milestones, and he was still suffering and screaming 24/7, we became worried that there could be something very wrong. It was at this time that Morgan began to have episodes of eye fluttering, and his pediatrician was finally concerned! We took him to be evaluated by a pediatric neurologist. This doctor was concerned about the small size of Morgan’s head, and his rapid eye movements, and ordered an EEG and MRI to be done.

Our entire world came crashing down around us when we received the results of these tests! The test results in addition to the clinical symptoms he was demonstrating indicated that he was suffering from Pelizeaus-Merzbacher Disease, one of a group of 17 identified diseases classified as Leukodystrophy. The neurologist relayed this information to us as if it were a certainty and told us to expect to have to make difficult decisions and that we would never see his 4th birthday. Period, end of sentence. And nothing more. He didn’t offer us additional testing, advice, or resources. He wouldn’t refer us to therapy because “why bother?” In fact, he was resistant to even writing the diagnosis down for us emphatic that we wouldn’t find anything about it on the internet – until I told him I simply wanted to remember the mouthful he had just dumped on us! He was in fact very wrong, we did find information online, despite it being the infancy of the internet back then!

Shortly after Morgan was diagnosed, we were devastated to finally accept the truth of his prognosis. In fact, we kept it a secret from our family and friends for 3 long weeks until it just came tumbling out of my mouth one day! It was not until 10 long months after this rare diagnosis when we accidentally stumbled upon a Mom based in Indianapolis that changed our lives so dramatically. The name “Patti Daviau” was nothing more than an isolated hyperlink we discovered buried within hundreds and hundreds of pages we had read online – so I clicked the link and it opened an email box. The reply that I got from her was immediate, and instantly we learned that the only experts regarding our son’s issues were ourselves … no one knows your child like you do, and our number 1 priority was to be his advocate. Through Patti and her wonderful support group we learned so much, and to this day credit that group of parents way back at the beginning with making the biggest difference in our lives!

Over the years more Leukodystrophies were identified, as DNA testing became more common. For our family that meant that when Morgan was 3 years old he was tested for the gene marker for Pelizeaus- Merzbacher Disease and it was determined that he did not have this particular disorder and since we had been told that he tested negative for all known Leukodystrophies he was now being considered as “unclassified”. Wow, that was like starting all over with another blow to the gut! We participated in numerous studies for unclassified Leukodystrophies over the years with no new answers – in fact, his DNA has been shared around the world with many researchers in many different countries.

Having the Hunter’s Hope Foundation as the only resource available to us back in 1997 for this rare orphan disease that no one had ever heard about was a lifesaver for us! In an effort to give back, our family participated in the annual Day of Hope for Children in celebration of Hunter’s birthday. Our older son, BJ was a scout and enlisted the entire troop to sell candles and then they hosted the vigil each year. Our entire community looked forward to this event every year! Inspired by the Kelly family to pay it forward as they had done, and knowing firsthand how valuable their support was, just prior to Morgan’s 4th birthday (a day we had been dreading for years) we decided to create a nonprofit organization of our own to help others on the same journey with their child and to give us focus for when he was gone and keep his memory alive. On August 21, 2001, we began The M.O.R.G.A.N. Project as nothing more than an online resource comprised of the thousands of online bookmarks we had saved from years of research. Little did we know that our little man had other plans – not just for himself but for this organization he inspired and that proudly bears his name!

As time moved on and Morgan proved the doctors wrong over and over and over again with each birthday cake, our family settled into our “new normal” and life continued. We learned to become Morgan’s best advocate and searched less and less for answers in the form of a definitive diagnosis and more in the form of Quality-of-life options. Our goal became and remains to give him the best days of his life, and focus on enjoying each and every one of them instead of focusing on what might have been, and what will never be. In fact, back in the beginning of this rollercoaster ride Patti once told me “not to waste a single moment grieving for that child – there will be plenty of time for that later” and we adopted that as our family creed!

Our beautiful son Morgan is now 25 years old – Yes, the little boy who would never celebrate his 4th birthday will be blowing out 26 candles later this year!!!! Over the past 2 decades, we have ridden this ride to the top, and free-fallen to the bottom more times than you can count. Ironically, a few years ago when Hunter’s Hope decided to launch the LCN I was invited to participate on the Steering Committee based on my work over the years with The M.O.R.G.A.N. Project. As a direct result of this, I met a researcher who was conducting a study into unclassified Leukodystrophies and asked me if I wanted to put Morgan in her study. I hadn’t thought about a diagnosis in many years!!! By this time there are nearly 50 identified so of course we did, and when Morgan was 19 years old we finally had an answer – Aicardi-Goutières Syndrome. The funny thing was that somehow it didn’t really matter anymore, we had already lived a wonderful life with our little man concentrating on the pleasures in life instead. But … it was important for our family, as he has 2 brothers who can now be screened for the disorder.

The moral of our story is that doctors rely on medical data and textbooks that have information based on studies that are sometimes decades old, and oftentimes are no longer reliable sources of information. Leukodystrophy research, newborn screening, and even treatments are now the way of life for a family living with this class of diseases when caught early. And for a small minority of us, our kiddos decided to throw statistics out the window and stick around for as long as they wanted to! We are blessed, on a daily basis to still have Morgan in our lives.

When we started The M.O.R.G.A.N. Project as a family more than 2 decades ago, little did we know that he would still be inspiring our programs today! Much like my dear friend and mentor Patti Daviau and the incredible Kelly Family that made such an impact on my life, I have been honored and privileged to be able to “pay it forward” in my own son’s name and get to honor Morgan and the inspiration that he truly is!

For me personally, this organization has given me a renewed purpose in my life and given me an opportunity to use the lessons learned along my journey to help light the way for other families as they navigate their own. Making the decision in 2023 to dissolve The M.O.R.G.A.N. Project after 22 years was bittersweet for me, as there have been many life changes recently. This has certainly been a time of reflection, and it is so clear that my focus is to continue to provide Morgan with the best Quality of Life possible and to continue to advocate for families living with Leukodystrophy.

I will be eternally grateful to the Hunters Hope Foundation for providing both for me – The M.O.R.G.A.N. Project with the opportunity to continue Morgan’s Legacy Gift through this endowment and for allowing me to continue serving on the steering committee for the LCN.