Your Host, the Todd family
From the FALL 2011 - National MPS Society COURAGE Newsletter
October 2011 - To say that the last few months have been a whirlwind would be an understatement. My name is Lisa, my husband is Jerry and we have three sons: Jake (17), Jack (8) and Jaden (4). We live in Albuquerque, NM, which is where Jerry and I grew up. Jerry and I met while attending college at New Mexico State University. I am a CPA and work full time for a large public accounting firm. Jerry owns his own financial advisory firm.
Jake is going to be a senior in high school this year. He loves his little brothers and is a very good athlete. In May 2010, he had the highlight of a long baseball career when his high school team won the New Mexico State Championship (Jake had a game-saving catch in the last inning). Our whole family was beyond thrilled with what Jake accomplished and we are so proud of what a wonderful and special young man he has become.
Jack is an intelligent, kind and active 8-yearold boy. He loves his family, his friends and art projects. Jack is going to be in third grade this year. Last January he began Tae Kwon Do and in May he tested to receive his yellow belt. I was so proud and amazed at all he had to memorize and learn to accomplish this. He is looking forward to moving on to his orange belt next. Jack loves animals and reading about them. He also loves drawing and from at an early age showed really great talent with his artwork. This summer he took an art program, which he loved. Video games, movies and Pokémon are also some of his favorite things.
Jaden is our crazy and active boy who never sits still. He is the complete opposite of Jack. He can’t sit still long enough to color an entire picture. He loves to do laps around our kitchen each night, so we are excited for him to start soccer this fall. He attends pre-school a few days and week.
Jerry and I recently have been into adventure races and completed two “Tough Mudder” races in May and June this year. These are 10-mile mountain races with more than 20 militarytype obstacles of 12-foot walls, mud, freezing cold water and lots and lots of hills. We enjoyed our time together training and running the mountains in Albuquerque to prepare, and it was a great feeling of accomplishment when we finished together.
Our family loves to travel and each year we try to take a Thanksgiving cruise with my parents and my brother’s family. Jack has spent five of his eight birthdays on a cruise ship. This year Jack is really looking forward to visiting the Harry Potter exhibit at Universal prior to catching a Caribbean cruise.
Our little Jack was born six weeks early but was still a good 5 lbs. 10 oz. We learned very quickly that he was going to do things “his way,” as he wasn’t the typical NICU baby. He was on a ventilator for a day and then oxygen for a week. After that he decided to take his time with learning to eat. Finally after four weeks in the hospital, my first “mama instincts” came into play when I basically told the doctors I was taking my baby home, because I knew (better than they) that he was ready. We had the best Christmas gift ever—to be home with our new baby just days before Christmas.
Throughout the years Jack had various hospital visits. More than most kids, but given that he was premature, it made sense at the time. For a while now, we noticed that Jack hasn’t been able to completely straighten some of his fingers. We went to his pediatrician who eventually referred him to a rheumatologist at the University of New Mexico Hospital for further evaluation. We were lucky that at that visit (May 2011), the rheumatologist grabbed the genetics doctor walking by the exam room. And then it all began…
In June, after results from X-rays, we received a preliminary diagnosis of MPS and then on July 7, 2011, Jack received the more specific diagnosis of MPS II.
Looking back, knowing what we do now, Jack’s past medical issues (some relatively common childhood issues, by the way) paint a picture of MPS. The chronic ear and respiratory infections, asthma symptoms, respiratory distress with an ICU admission, umbilical hernia, and not being able to straighten his fingers all now make our puzzle fit.
We are so blessed with the timing of our diagnosis. The day I was told Jack had MPS, I learned of the MPS Society annual conference online and quickly got connected. Within weeks of our diagnosis, I was able to have the opportunity to learn so much from doctors and parents at the conference. This was a truly priceless experience. I know I have made friends I will have for a lifetime.
We also are so lucky to have wonderful friends and family. They have provided prayers, love, support and understanding during all of the craziness.
Jerry and I pray for a cure, strength, minimal complications and discomfort for Jack, and wisdom and compassion for his healthcare providers. Meanwhile, Jack will continue, to the best of his ability, with all that he enjoys. Although we are sick about this diagnosis and we have already experienced many ups and downs, there is no doubt that with Jack’s zest for life, he will continue to persevere and soar through his tests and treatments with that never-ending smile of his, during the days and years to come!