It’s hard to believe a year has passed since our MLD journey began! A year ago tonight we were sitting in the hospital ER waiting for a bed on the Psychiatric floor with the thought that Greg had Schizophrenia.
We have been blessed by the number of people, friends, family and even strangers that have reached out to support us in prayer and love and acts of kindness!
In February of 2014, we informed a lot of you as to what Greg had been going through and we said we were going to try to start a blog. That never came to fruition and instead our good friend Scott has helped us to develop this website.
So we are going to attempt to update you on the rest of 2014. Going forward, we will try to keep our updates more regular.
We were able to visit the White House and Greg’s Grandma even arranged for us to have a private tour! Greg also started taking pottery classes and made many flower pots and even a bird bath!
In March: We were fortunate to meet a couple that lives in Towson, Maryland whose 25 year old daughter has MLD. They have helped us navigate this new reality and introduced us to the MLD Foundation. We have received so much online support and wisdom from this group and are eternally grateful for their help. In the world of rare diseases it is so hard to find any kind of support group and this one is Amazing! We have made new friends and hope someday to meet many of them in person. No one understands the journey you’re on as much as someone who lives/or has lived it.
We also started going to Crossroads Church and we all have been struck by how much it has filled the hole that our beloved Reverend Cherry had left us with. There are a group of Twenty Something’s (actual name of the group) that have embraced Greg and taken him in as one of their own! He meets with them every Tuesday evening at the Church and then they have fellowship afterwards at a local restaurant. He also has been periodically invited to join them at various events. For the first time in a long time, he feels like he “fits in” and is part of a caring, wonderful, Faithful group! God is good!
Greg went to the Leukodystrophy Clinic at Kennedy Krieger for the first time in March. Greg was evaluated by Physical Therapy, Rehabilitation Therapy, Genetics and a different Neurologist. This Neurologist gave us a bit more hope and felt that Greg’s disease is progressing slowly and that his belief is that it might be a decade before we see more debilitating decline. The focus remains to keep him active, involved and stress free.
On that note, we did attend the Philadelphia Flower show and were extremely impressed with the varieties and displays they provided. Greg came home with so many new ideas and several new plants, thanks to Grandma!
Greg started Therapeutic Horse Back riding late in the month. Horses have become his new passion! He has wonderful posture on the horse and really enjoys the “walkers” that are with him. When riding he does have trouble with his clonus (legs jumping), but with a few adjustments is usually able to calm it down.
In April: we decided to take advantage of our frequent flyer miles and used Emily’s spring break to go back to California! We went to San Diego and we were once again blessed by the kindness of strangers! We met a wonderful woman on our flight from Denver to San Diego! Emily refers to Nora as our Guardian angel! She had a long discussion with Wayne (easy to do) and learned of Greg’s new diagnosis and also his passion for plants. It turns out she is a landscape designer for Sea World! The next day we received a package at our hotel that included tickets to Sea World and tickets to the Animal Safari Park and a box full of succulents (plants)!!!
Later in the week, Greg asked if we could go on a Horseback ride, so we took a trail ride through some local canyons! Greg was able to show us his newly acquired equestrian skills!
We also took a Segway ride through the streets of San Diego and into a park with an Arboretum! Greg lost control of his Segway at one point and ended up landing in a small tree; we missed our opportunity for America’s Funniest Home Videos!
In May, Greg and I visited the Cylburn Arboretum and the Rawlings Arboretum. He continued with his Therapeutic Riding as well as all his other therapies. He and Wayne were busy planning and purchasing plants for our spring and summer gardens as well.
In June, Greg graduated from high school. (The county had provided a home teacher that helped him complete his final class for his high school requirements). We were again blessed by the support and generosity of North Carroll High School (Administration and staff) and the County for allowing us to have a private graduation for Greg! It was held at the school in the morning of his actual graduation day! We were overwhelmed with the turn out and blessed to see so many family, friends and even former teachers come and help to celebrate his accomplishments! The personalization that we were afforded made it that much more special! We had so much help with decorating, making cookies, loaning chairs and tents, coolers, deliveries, pickups, cleaning and serving. It was a tremendous group effort and we are so blessed to have so many people that wanted to help!
Greg’s friend Joe was able to provide a private tour with the Horticulturist of the National Aquarium’s Rainforest, including behind the scenes looks at plant growth and tricks at plant maintenance.
In July, Wayne and I traveled to Pittsburgh for the MLD Foundation Family Conference. We met many families whose young children are suffering from the Infantile form of this disease which progresses very rapidly. It broke our hearts to see such young families with tremendous illness and yet such strength! We were able to talk to 3 other couples whose adult children are battling this disease as well. We learned so much more about the disease and its effects and felt a sense of community and family. However we also came away feeling frustrated with the lack of scientific research being done and the lack of treatments available. Because MLD is such a rare disease there aren’t many scientists or patients for that matter to research options. More than ever we feel compelled to educate the medical world about this disease!
In August, we took Greg to Pittsburgh to meet with an expert on rare diseases. This doctor has seen over 100 cases of MLD in her career but only about 9 of the “older kids”. She said Greg presented better than his MRI would indicate and told him to “live like you don’t have MLD”. She said that a Bone Marrow Transplant might slow down the progression of his disease. We met with the transplant team and although they are hopeful, they admit that this treatment only slows the progression at best, it is not a cure. There are so many risks involved with a transplant, including death. We researched and prayed and talked to as many MLD families that had and had not had transplant and eventually decided that the risks outweighed the benefit. We want to add life to Greg’s days and not days to his life. We are so afraid the transplant will take away what he can still do and just prolong the future agony. Having said that, we are Never Never Giving Up! There are gene therapy trials in Italy that show promise with the Infantile stage of MLD and there are studies on enzyme replacement. We are hopeful that in Greg’s lifetime there will be great strides in finding a cure for MLD and other Leukodystrophies.
In September, when the ALS Ice bucket challenge was so prevalent Greg asked to come up with a Challenge for MLD. The online community decided on “Get Muddy for MLD, because it’s a dirty disease”. That led to the birth of Greg’s Challenge and the subsequent making of the “Muddy Bracelets”. The exciting thing is that his hand tremors actually stop while he is threading the beads. Our mission is to raise awareness for MLD and raise funds for research, education and funds for his “Bucket List” and future medical expenses.
Greg also returned to Therapeutic Horseback riding. He really enjoyed it and even participated in a Horse show!
In October, Greg started Cognitive therapy with the hopes that we can make new pathways in his brain to go around the affected areas. We’re trying to increase his processing speed and improve his working memory. We also met with the Department of Rehabilitative Services to try to obtain employment for Greg. Like any government agency, it takes time!
Greg also had all four of his wisdom teeth removed. He was unable to have anesthesia (inhaled anesthetics are known to progress MLD in some patients) so he toughed it out with Novocain for the surgery and then Motrin the days after.
In November, Greg’s gall bladder was checked, as it seems to be a common problem in MLD kids. He had an ultrasound first, which showed that it was contracted. He then had a HIDA scan which determined that it wasn’t functioning. Luckily, Greg had no pain, he just frequents the bathroom after meals. We decided to plan his surgery rather than waiting for Pancreatitis or some other emergency. During his physical, he was found to have a bruit (an obstructive noise) over his carotid and aorta; as well as a nodule was felt on his thyroid. He had some ultrasounds and met with a Cardiologist who determined that it wasn’t serious, something to be watched. The blood work on his thyroid came back elevated so we made an appointment with an Endocrinologist. Once again, with his testing and frequent trips to doctors we have been educating “the world” about MLD. Even the sonographer wants to help Greg raise awareness for MLD!
On December 1st, Greg had his gall bladder removed laporascopically. Since inhaled anesthesia is not advised in MLD patients, we had consulted with the MLD world and the Anesthesiologist, and it was decided to use Propofol. Fortunately he seems to have had no ill effects from the anesthesia. He had severe clonus a couple hours after the surgery (because he hadn’t had his medicine that morning) and a strange rash that came and went but we were able to control both with medicine. Greg is quite proud of his “bullet holes” and he only required Motrin for the pain. He finally was able to have his “interview” for a job placement and we hope to hear back from them in the near future.
Now it is January again. Greg continues with emotional, cognitive, physical therapies and aqua therapy. The aqua therapy helps release the tension and tightness in his legs, so much so that his grandmother is gifting us with a hot tub. We’re grateful the voices have subsided and the hallucinations are less prevalent. Although the clonus is present it is manageable and not painful. Maturity is an issue that continues to aggravate us all. His working memory is still a worry and his lack of common sense is troublesome. But on the positive side he’s independent in his walking, talking and eating; and he has a great sense of humor and humility. He enjoys being with people and going to a horse barn whenever he can. He treasures his time with Marcy who keeps him busy at her barn quite often. The Twenty Something group occupies his Tuesday evenings and his Facebook time. He looks forward to employment soon and continues to make bracelets several nights a week.
So in the scheme of things, we’re blessed. We’re more educated, more prepared and less anxious. We’re blessed by the support we’ve received from everyone. We’re aware of what MLD has robbed from Greg. We’re trying to understand the purpose of all of this. We will continue to learn and educate others. We continue to pray for research to find an answer. We are living a new “normal”. But we will Never Never Give Up!