Malfara Family
Morgan’s birth (late 1997) itself was uneventful, and he was born perfect in every way that new parents believe their child to be perfect — 10 fingers and 10 toes, a perfectly formed tiny body, and announcing his arrival with a healthy wail! Although amniocentesis had told us that our unborn child was healthy, seeing him so apparently perfect was a great relief, and our joy was immeasurable.
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.
Morgan’s birth (late 1997) itself was uneventful, and he was born perfect in every way that new parents believe their child to be perfect — 10 fingers and 10 toes, a perfectly formed tiny body, and announcing his arrival with a healthy wail! Although amniocentesis had told us that our unborn child was healthy, seeing him so apparently perfect was a great relief, and our joy was immeasurable.
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 different diseases classified as Leukodystrophy. Te neurologist relayed this information to us as if it was 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. Trough Patti and her wonderful support group we learned so much, and to this day credit that group of parents with making the biggest difference in our lives! The moral of our story is that the doctors rely on medical data and text books that have information based on studies that are sometimes decades old, and often times are no longer reliable sources of information. Every little thing that we have learned on our journey as Morgan’s caregivers has come from another parent that has “already been there, done that” and we are better parents/caregivers/advocates as a result.
Our son Morgan is now 17 years old - Yes, the little boy that would never celebrate his 4th birthday will soon be blowing out 18 candles!!!!
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. Trough Patti and her wonderful support group we learned so much, and to this day credit that group of parents with making the biggest difference in our lives! The moral of our story is that the doctors rely on medical data and text books that have information based on studies that are sometimes decades old, and often times are no longer reliable sources of information. Every little thing that we have learned on our journey as Morgan’s caregivers has come from another parent that has “already been there, done that” and we are better parents/caregivers/advocates as a result.
Our son Morgan is now 17 years old - Yes, the little boy that would never celebrate his 4th birthday will soon be blowing out 18 candles!!!!
