When
Emma was officially diagnosed with Meier-Gorlin Syndrome by Dr. Mark Hannibal
at the University of Michigan in January, we began reaching out to different
organizations that we could become a part of for her. The first one we
contacted was the LPA: Little People of America. Then we searched more specifically to find Sue Connerty who lives
in the UK and is the president of Walking with Giants, which is for Primordial Dwarfs. Meier-Gorlin Syndrome falls
under the category of Primordial Dwarfism. Since we live in the US, she put us
in contact with Christy Jordan who is the president of the Potentials Foundation- the US version of Walking with Giants.
We found out that the LPA was having a week long conference at the beginning of
July in Orlando and hoped to go to it, but at the time (in January) I was
currently scheduled to work that weekend and did not want to think about asking
for time off in the summer while I was already using a lot of medical leave to
be in Michigan with Emma for her experimental 3D splint surgery. Luckily, since
Emma finally came home from the hospital on April 30th, and I was able
to take 12 weeks off to enjoy a “real Maternity Leave”, the LPA fell on my 11th
week! Originally Emma had a big surgery day scheduled (she needs to get her
G-tube revised again and her hearing re-tested) for July 9th and 10th
while the convention was going on. But a week before, the surgery got postponed
and we were able to make it four of the days! Michael loves to remind me that
God has everything under control, even if to me at first, getting an important
surgery pushed back a second time, did not seem like a good thing.
The
first day (Saturday, July 7th) was just getting registered for the
conference and then waiting around for a Meet and Greet. Everyone was very
friendly and helpful. Michael said he was nervous because he didn’t know what
to expect. Our name tags had a special purple ribbon attached to the bottom
that said “First Timers”. I guess Emma’s cuteness drew attention because a lot
of parents would come over and start asking questions, which is super normal in
a conference like this.
The second day we met with the Potentials Foundation, a much
smaller group (pun not intended). Everyone went around and introduced
themselves before Christy Jordan talked about the foundation, what we would be
doing over the next few days, and then we played a BINGO game to get to know
everyone. It was cool to meet a handful of the Primordial Dwarfs that we had
watched documentaries on including Bri Jordan, Nick Smith, and Hannah Kritzeck.
We ended up sitting at a table that had a 32-year old girl named Jenny with
Meier-Gorlin Syndrome! We talked to her a lot about the condition, but also
about her jobs and regular topics. She also does not have knee caps and walks
just fine, so that made us feel good bout Emma, however this girl did not have
the backwards bending legs. Jenny was also surprised that Emma had a trach
because of the many people she knows through social media with MGS, none of
them ever had a trach. That makes me wonder if Emma is the first? Another
reason why a lot more research needs to be done for doctors to be aware- to
help Emma or other kids with the same conditions. We all went out to dinner
that night, which was paid for by the foundation! Christy told us that about
1/3 of the donations go towards bringing everyone together once a year and the
rest of the money goes towards research. And research is definitely needed!!
The third day, Michael and I brought Emma back to the hotel
where the conference took place for an hour-long meeting before almost everyone
went to a water park. We did not go to that for obvious reasons: Emma having a
ventilator and G-tube. So we hung out at home and ran errands before leaving
the house again to meet all of the families at Olive Garden. That was a really
good time again. We sat next to different people than the night before, which
was great, because then we got to hear all of the different stories of struggles,
hope, and achievement!
The fourth day/ yesterday (our last day going) was probably
my favorite. Everyone met outside the Orlando Eye – the huge, slow moving
ferris wheel – and then some people did the Sea Life Aquarium after that before
grabbing lunch and meeting back at the hotel for a genetics workshop. Two of
the other girls, Maddi and Loini, had gone to Islands of Adventure earlier and
Maddi won a stuffed toy cat in one of the arcade games. When she walked in the
room she asked us if it was okay if she could give the cat to Emma. I seriously
thought I was going to start crying- it was such a sweet gesture! In the
workshop meeting we met Dr. Michael Bober and Dr. McKenzie, the leading researchers
in genetics and orthopedics in the study of Primordial Dwarfism. They work out
of Nemours Children Hospital in Wilmington, DE. I felt good when Dr. Bober
said, “Meier-Gorlin Syndrome is the healthiest type of Primordial Dwarfism.” At
the end the genetic counselor, Angie, handed out Parental Permission Forms for
Research Study so we could give consent for them to get copies of our kids’ hospital
records that way they have more (updated) information about the various types
of Primordial Dwarfism, including MOPD 1 and 2. The forms were voluntary, but I
think everyone still signed them. I filled out two for Emma since she was seen in
Michigan for a while too.
Side note: Emma
needed a diaper change during the doctors meeting. Michael is more of the “mom”
so he left to change it, and on the way to the bathroom he saw actor Warwick
Davis in the hallway!! J
After that work shop we had two hours until our last group
dinner, so a lot of people hung around to talk and say good-bye (or as we
prefer to say, “see you later!”) if they were flying home early and wouldn’t be
at dinner. One of the moms, Lori Everson, passed out copies of her book “Take Me as I Am” to everyone and of course we all asked her to sign our books! I
can’t wait to read it. We got to talk to her and her husband, Tim, a good bit
about their 5-year-old daughter, Harmony, who was always running around and
dancing. Every story is so unique, and this weekend definitely created a bond
stronger in person. Although the whole foundation only gets together once a
year for the LPA conference, which is in a different state each year, they have
“Chapters” where everyone within 100 (?) miles of certain cities meet up a few
times per year. I believe there is one near Orlando that meets up in August.
Michael and I will definitely go if I’m not working. Last time I was working
and Emma was still in the hospital.
We are so blessed to have your family attend and be a part of our foundation! I can't wait to get together again!
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