Morgan's Story & The founding of The M.O.R.G.A.N Project

kristen and morgan 200-2This is our story about Morgan, a beautiful, blue-eyed baby boy. He is our beloved son, adored little brother, and precious gift from God. He came into our lives on October 22, 1997 after a most difficult and high-risk pregnancy. Morgan’s arrival was made even more special, because of the many obstacles that he overcame on his way into this world. Many a time we thought that he would not, yet we were truly blessed when he did!

Morgan’s birth 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 fine, seeing him so apparently healthy was a great relief, and our joy was immeasurable.

We enjoyed a joyous Holiday season with our new addition to our family. You see, we are a “blended family”. Morgan has a big brother, Jordan, by his father, as well as a big brother, B.J., by his mother. Although the 4 of us have been a family now for over 7 years, with Morgan’s arrival, it meant that each of us was related by blood to this precious little boy, and his birth only strengthened our family bonds. This little angel must surely be the most loved baby in the world!

When Morgan was 10 weeks old, he started to demonstrate symptoms of colic, and our doctor suggested different remedies we could try to alleviate his discomfort. However, as time went on his pain got worse, 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 from Reflux, 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 we took him to be evaluated by Dr. Michael Duchowny, Director of the Department of Neurology at Miami Children’s Hospital.

Morgan’s EEG test came back negative for seizures, which was a great relief, however, Dr. Duchowny was concerned about the small size of Morgan’s head, and his rapid eye movements, and ordered an MRI to be done. This diagnostic test would hopefully tell us what was happening to our beautiful little boy. We had to wait 4 weeks before the test could be done, and those 4 weeks felt like a lifetime to us!

On June 4, 1998, our entire world came crashing down around us, when Dr. Duchowny had the sad task of telling us the results of Morgan’s MRI. He explained to us, as gently as he could, that Morgan had severe problems. Dr. Duchowny explained to us, in terms we could understand, that our son’s MRI, 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. Although he was mindful of our fragile state and shocked reaction to this devastating news, he was forthright and pullmorganproject malfara family 2000-2007ed no punches. Looking back on that day in his office, and knowing what we now know about this disease, we are grateful he offered no false hopes, although now we know his information was based on medical research that was over 10 years old.

Morgan’s disease is an extremely rare, genetic disorder, considered the “rarest of the rare” of the Leukodystrophies. We had never heard of this class of diseases before, and doubt that very many people have. The truth of the matter is, in the most simplistic of terms, that Morgan is missing an enzyme required to form Myelin, the coating that forms on the white matter of the brain. Without Myelin, his brain cannot function properly. Without Myelin, he has no future. There is no treatment, no cure. According to the medical community, the course of Pelizeaus-Merzbacher Disease is progressive deterioration until death. Death. No treatment. No cure. No hope?
We refuse to believe that — there is always hope. Our hope is that the researchers and scientists that are trying to unlock the secret to remylenation will succeed in Morgan’s lifetime. Our hope is in The Myelin Project, a group of doctors, scientists and researchers who have dedicated themselves to researching Leukodystrophies. Our hope is in the United Leukodystrophy Foundation, dedicated to education, research and support of groups like The Myelin Project. Our hope is in The National Institute of Health (NIH), Arnold Palmer’s Children’s Hospital (APH), it’s wonderful doctors, and all the other organizations working together in the medical community to find answers.

For these scientists to succeed, their research and experiments need funding — and our entire family has dedicated itself to getting the word out, letting people know aboufamily kristen sonst Leukodystrophy, in particular Pelizeaus-Merzbacher Disease, about the ULF, NIH, APH and most importantly, The Myelin Project. Our son Morgan needs their help, and they need ours. Our goal is to educate people about this disease, and do everything possible to help raise funds. Our son’s life must not be in vain!

Both the ULF and The Myelin Project have their own websites, with detailed information about Leukodystrophies and research in this field. There is also another website, called Hunter’s Hope, which was established by Jim & Jill Kelly, whose son Hunter suffered from Krabbes Disease, yet another Leukodystrophy. Because of their celebrity status and connections, they have been very successful in raising funds for research, and utilizing the media to tell the world about this devastating disorder. Our family takes great comfort in their efforts.

We need to give meaning to Morgan’s life, and refuse to sit back and wait for someone else to do this for us. We are not famous, nor do we have a network of rich and well-connected friends and associates. We are your neighbors, your co-workers, and your acquaintances. We need your help, to help us help our son. Please, remember the ULF and The Myelin Project when you make charitable donations. The Myelin Project can be designated on your United Way contribution distribution forms. If you know anyone who makes charitable donations, a friend, relative, CEO — anyone — we will be eternally grateful if you would mention these wonderful organizations to them. Access their websites yourself!

Many of you are parents yourselves, and hopefully have never had to experience the heartache that we are being faced with, and God willing, never will. We certainly never robert malfara co founder director emeritusimagined we would! Parent to parent, we are asking you to keep our Morgan in your hearts and prayers, and help us to get the word out about Leukodystrophy and the wonderful organizations dedicated to finding a cure. Now with The M.O.R.G.A.N. Project, we are hoping to help those that so lovingly care for these children, YOU, their parents. But, we need your help. Please, be generous and consider all of these wonderful organizations when it comes time for you to make charitable contributions!

After digesting all the information we were given by the doctors, which wasn’t very current and certainly not as detailed as we needed, we began our journey of learning, and our first stop was the Internet. Not only did we learn that Leukodystrophy comes in many different forms, but it also has many different outcomes and NO prognosis is set in stone! After nearly 5 years of research, we now realize that this does NOT have to be a death sentence for Morgan, at least not for a very long time. Our job as Morgan’s caretakers just took on a new role … protector. We needed to protect his lungs and respiratory system. More than anything else, THIS is what kills these children, and if we can prevent pneumonia and minimize his aspiration risk, we will have won a major battle! We also needed to monitor his seizures, oxygen levels and heart rate. We needed to keep him moving, keep his muscles healthy, provide him with a means of weight bearing so his bones could grow.

And most of all, we needed to be Morgan’s advocate! We have found over the years that WE are now the “experts” on this disease, and in many cases we know more about what is going on with our child’s health than his doctors do. We keep abreast of all the research studies out there, and participate in as many as we can that are non-invasive in nature. We are constantly researching medicines and therapy protocols, to make sure that Morgan is getting what he needs, not just what the insurance wants to pay for! And most important for ourselves and our family, we have found a wonderful and caring support group of families that has “been there, done that”, and they have proven to be our greatest resource for up to date information.

malfara family space coast daily parents move mountains for special needs

PMD is characterized as a dysmyelinating Leukodystrophy rather than a demyelinating Leukodystrophy. This means that in PMD, the boys are born with an insufficient amount of myelin in the first place, rather than gradually losing myelin over time. Because PMD is the only dysmyelinating disease in the Leukodystrophy family that has been identified, and Morgan’s MRI’s have indicated that he has an almost near-absence of myelin, he was originally diagnosed with PMD. Since the time we were given a clinical diagnosis of Pelizaeus-Merzbacher Disease, Morgan has had a DNA study of his PLP gene done by both Dr. Hodes in Indiana and Dr. Hobson in Delaware. Both studies failed to locate any abnormalities on his PLP gene. This result has been explained to us as “inconclusive”, because the involvement of the PLP gene can only confirm a diagnosis, it cannot rule it out. Since that time, Morgan has also been involved in research studies in Houston, France, and at the NIH. The foremost experts in the area of Leukodystrophy have now concluded that more than likely Morgan falls into the “unclassified” category, meaning the specific gene involved and the specific enzyme affected have not yet been discovered. Hopefully, by continuing to participate in these studies, the researchers will eventually discover the origin of Morgan’s Leukodystrophy. In fact, since his diagnosis in 1998, 8 more Leukodystrophies have been identified.

July 2002

Morgan had so many feeding issues with his G-tube, that we decided to try feeding him directly into his intestines through a GJ-tube to see if it made a difference. Indeed it has! Morgan has no retching, vomiting or aspiration problems associated with feeding anymore, has grown like a weed and put on weight for the first time in years! His seizures changed radically this year, and he tested positive for Grand-Mal episodes. We had 3 very scary situations, but now that his medications have been changed, his seizures are under control once again. In March Morgan had hip surgery, and seems to be doing very well. His pain is gone, he enjoys sitting in his wheelchair again and is even making attempts to roll over and kick his legs more! What a difference it has made in our little boy now that he is pain free. Now all those weeks in a full body cast seem to have paid off! In September Morgan began kindergarten at Ocean Breeze Elementary in Indian Harbour Beach. He even rides the school bus back & forth! Morgan has a one-on-one aide, Miss Geri, and he is loving school! We have seen such progress in all areas since he started. We also tried botox injections in his legs for spasticity, and he had a wonderful reaction to the shots, and his therapy has been much more effective as a result. Our baby is now a little boy, interacting with everyone around him, charming everybody, and enjoying every minute of every day!

December 2003

Morgan continues to grow, and is now over 40 inches tall and 41 pounds! He loves school, and we have been very fortunate that his school and teachers have been so welcoming and accommodating of all Morgan’s special needs. As everyone with a special-needs child knows all too well, this journey is a roller coaster ride, and what goes up must eventually come back down. Our family has certainly taken the ride many times! For now, we are enjoying coasting at the top for as long as Morgan can!

March 2004

Morgan has continued to ride the roller coaster near the top of the ride for almost 2 years now! Yahoo! Our little boy is now a young man at 7 years old, and lets everyone know it. He is in 1st grade this year, and still loves going to school, especially his bus rides with Miss Judy! Earlier this year he had surgery again, this time to release his adductor muscles in his right leg. He has grown so much since his hip surgery that the muscles tightened right back up. Unfortunately, Morgan also ended up with a broken tibia & fibula in his left leg in early May due to a mishap getting out of the van in his brand new (and it turns out MUCH wider) wheelchair that left Mom feeling awful! The wheelchair is wonderful though; this time we designed it ourselves and had it built to OUR specifications, and it is perfect for all of Morgan’s needs. Some of the highlights of this year have been our trip to Discovery Cove to swim with the dolphins in April. Morgan’s class raised the funds for this trip and we had a blast!! I would highly recommend this to anyone with a child that has special needs, they accommodate you to the hilt! It is VERY expensive, and would be one of those “once in a lifetime” visits, but if you can manage it, DO IT! Of course our own highlight was our 1st Annual Turtle Splash & Family Bash, which is The M.O.R.G.A.N. Project’s signature annual FUNdraising event. We grossed over $10,000 for our very first year, and because our first time expenses were high, we netted a little over $5,000 …. excellent for our first time out! Next year should be much better for our bottom line since almost half of our expenses were items that will be re-used in subsequent years. Morgan was the star of the show (of course!) and so many of the people who came to support us came because of Morgan …. he has been our very own ambassador! Morgan has even more girlfriends than he had last year, and continues to make friends everywhere he goes. We are looking forward to flying to Indy in June for the annual Riley/PMD Family Conference, and perhaps a relaxing summer, too!

May 2005

Morgan has continued to grow this year. He turned 8 years old last month, and is now over 4 feet long and 45 pounds! He is now in 2nd grade, and is making many more friends. For Halloween this year he even dressed up as his school bus in honor of his very special friend, Miss Judy, who drives his bus. (Click here to see the pictures) We had a great time in Indy this past summer … Morgan did great on the airplanes and had a fun time seeing all of his old friends, and meeting new ones too! His health has continued to be terrific, Thank God! He seems to have good years and bad years, and we’ll take all the good ones we can get! The family is looking forward to our trip to the Poconos over the Thanksgiving Holiday, and seeing extended family. Morgan has proven to be quite the traveler this year!

November 2005

Morgan has had one episode of pneumonia this year, but he did so well with it he was never even hospitalized! He has really enjoyed this past school year being in the 2nd grade, making LOTS of new friends! Morgan has been a bit of a local celebrity this year thanks to all of the media coverage we had for our 2nd Annual Turtle Splash & Family Bash …. his picture has been EVERYwhere and he is recognized everywhere we go these days. We have made some new friends this year that have special needs and we have joined together with them on a couple of occasions for joint promotional projects and fundraising. If you get a chance, visit them at these sites: www.bobbyjowoodley.com and www.sierrasjourney.com. They are using racing as a means to raise awareness for Autism and SMA and need our support, too! We are not going to be able to make our yearly jaunt to Indy this summer for the Riley/PMD Family Conference because B.J. will be at Philmont camping and Robert has to work, so we will miss seeing everyone this year! We expect to have a fun summer …. lots of swimming we hope!

May 2006

Morgan has had a great few years now, with very little medical issues to deal with, which has been such a blessing for our family. He is continuing to grow, although if he gets as big as his brother B.J. (16yrs. 6’7″) we will be the ones in BIG trouble!! Later this month he will start the 4th grade, still at the same school with the same teachers, classmates and his special assistant, Miss Geri. He is really looking forward to getting back to school, because he finds playing with Mom at home over the summer very boring. We have had the usual issue with not being able to find nurses for Morgan’s home nursing care, but we are getting really good at the 2-man lifts around here! B.J. started driving and working this year so he has been a bigger help to us, and we don’t have to drag Morgan around as much. Morgan and Mom flew up to New England this summer for a 10 day getaway to visit family, and he did terrific on the flights again, what a great traveler he is! The 3rd Annual Turtle Splash & Family Bash was a family affair again this year, and quite successful, too. Looking forward to starting the grants program this fall!

August 2007

Wow, has it been that long since I updated this?? Morgan is now 11 years old and doing terrific, attending 5th grade and still loving school. I guess our family has been very fortunate in that Morgan has been so healthy and The M.O.R.G.A.N. Project is doing so well, also. If you read the home page, you already know that 2008 was a big year for me, both personally as well as professionally. Being recognized by Charming Shoppes as one of their 5 finalists in the 2007 VOICES® campaign and being on The MONTEL Show to get the donation for our charity was certainly a highlight for me! Our 4th Annual Turtle Splash was another big success, and our “Celebrating a Milestone” VIP/Sponsor Cocktail Party & Silent Auction held at Lexus of Melbourne was also a big success for us, and will become an annual event. The first year of our Small Grants Program was well received, and we awarded 18 grants totaling over $12,000 to families with disabled children – how terrific! Small wonder I haven’t time to update this column, LOL! I never fail to remember that we were told that Morgan would never see his 4th birthday – and all these years later he continues to amaze me by just how healthy he has been the past 4 or 5 years, and he remains my inspiration. Bigger and better for 2009!

January 2009

Guess we have been a little busy, LOL!  Can’t believe that I haven’t updated this in over 2 years!!!  Morgan is a teenager now, just turned 14 years old – what a miracle child!!  He is at a wonderful private school for children with physical disabilities called No Limits Academy, and it has truly been a blessing for us, since we had no other options for him in the public school system.  (I’m sure those of you who have fought your own battles in the school system don’t need any explanation!)  Our older boys are off on their own now … Jordan is now 26 years old and living in Colorado, and B.J. will be 21 years old next month and is a Junior at the University of Florida, living in Gainesville fulltime.  It has been an interesting experience for us, since our “empty nest” is certainly NOT empty!  Caring for Morgan gets more difficult each year physically for us, since he is now 5 feet tall and weighs 62 pounds – Robert and I are aching all the time, but every muscle strain is just a reminder of how fortunate we are to still have Morgan in our lives.

2010

I was fortunate enough to receive another recognition in 2010 from Longines and Town & Country Magazine, and we were able to get a full page advertisement in the magazine about The M.O.R.G.A.N. Project – more national recognition for our Quality of Life Support programs – yay!  And this year we are opening our therapeutic play center for children with special health care needs, right here in Melbourne Beach!  Looks like another exciting year for Morgan, for the Malfara household AND for The M.O.R.G.A.N. Project.  And right around the corner is our 8th Annual Turtle Splash, still our very successful annual signature FUNdraising event.  Be sure to adopt YOUR turtles and help support us!  Hopefully I will update sooner next time …. God Bless!

2013

Ok, guess The M.O.R.G.A.N. Project AND the Malfara Family have been doing so well that it’s taken me over 2 years (again!!) to write an update.  We opened Morgan’s Place in Melbourne Beach in late 2011, then moved it to our permanent location at 4241 N. Highway 1 in Melbourne in early 2013.  The organization and our programs continue to grow by leaps and bounds – we are so thankful!!  Our family has also been doing well, other than the medical ups and downs that go along with having a medically fragile child but all in all Morgan is doing very well, and will turn 17 in October!  He is 5’2″ and weighs over 75 pounds, so he’s beyond a handful for us but we have been able to build a new home that accommodates his physical challenges and makes it easier on us (and our backs!) to care for him.  We are very blessed to have Morgan still in our lives, and give thanks daily to the many people that have come into our lives to assist us with us care.  Looking forward to the next few years as BJ and Kayla get married and Morgan’s Place continues to expand … please keep checking back to see what’s new.

2016

So once again I am waaaay behind on my family updates, LOL!!  Perhaps our biggest news came in early 2015, when Morgan was finally and property diagnosed with Aicardi-Goutieres Syndrome … for so many years we believed his form of Leukodystrophy was Pelizaeus-Merzbacher Disease then unclassified Leukodystrophy and to have the correct diagnosis is crucial!  His brothers and their spouses will be able to be tested now to see if they are carriers which was not an option without a definitive diagnosis.

This year, Morgan welcomed a sister-in-law, Kayla who married his big brother, BJ on March 5, 2016.  Morgan was so excited to be a part of the wedding!!  Our now 18 year old young man still loves Disney and Morgan’s Place, and of course visiting Tranquil Waters every year for our family vacation.  We also added another new member of the family – our sensory/companion dog, Buster Roo.  We adopted him on our vacation in 2014 through the  Companion Pets program at the Christopher Douglas Hidden Angel Foundation.  Buster is so wonderful with Morgan at home, and he has proven to be the perfect sensory dog at Morgan’s Place and loves going to visit the kids there.  We held our 12th Annual Turtle Splash fundraising event earlier this – can’t believe how long we have been doing that!  Morgan’s Place has expanded this year as well, opening our new Garden Sensorium adjacent to our facility and we are so very excited about offering Special Olympics Young Athletes and Motor Activities Programs this fall, too.  The M.O.R.G.A.N. Project has been collaborating with so many wonderful organizations the past few years, and is looking forward to forming new ones soon as well.  We are still plugging along with this charity, serving one child at a time and honoring our Morgan every time we do – so, what more could we ask for?