Parents, big brother (with enthesitis-related JA), and warrior sharing our perspectives of Juvenile Rheumatoid Arthritis, a painful autoimmune illness affecting joints & internal organs. JA affects 300,000 children in the US. Many also have other autoimmune illnesses. There are multiple forms of JA; some less severe than others. Parker has systemic onset JA with overlap syndrome, hypogammaglobulinemia, severe allergies and asthma. We proudly pound at JA together, HOPING for a cure!
We have had an incredibly hard several weeks…Parker seems to
be struggling again.The good news is
that he does not have interstitial lung disease.This is pretty huge.The team of docs and us were pretty concerned
about this because it is irreversible.We
embrace and celebrate this amazing news.
We also found out last week that Parker now has
osteoporosis.This is not only due to
his disease activity but also because of the treatment.As parents we make very difficult choices and
sometimes the side effects are the lesser of the evils that we face.His doc has already begun treating the
osteoporosis with a once-a-year infusion of Reclast.This would explain why Parker has had some
difficulty with the wrist and thumb he broke more than a year again.
Parker is still having lung obstruction and
restriction.Last week he was fitted for
a c-pap mask to prepare for his overnight sleep study.There is some concern that he may be having
difficulty breathing at night.This
would certainly explain why he has been sleeping more than he is awake.The overnight study is scheduled for April
but we are also on the wait list for cancellations.
Parker’s vision seems to be shifting and becoming
blurred.We have an appointment with his
ophthalmologist to check this too.
So as you can see, we have some new hurtles to
overcome.This week we have just been
trying to keep him out of the hospital.His symptoms have spiked…rashes, fevers, swelling, extreme fatigue,
muscle weakness, and way intense pain.He has missed the entire week of his hospital homebound classes, had to
be excused from FCAT testing, and hasn’t even played Xbox or texted his
friends.His doc suggested we admit him
on Friday but he really didn’t want to go.Who could blame him…so we decided to see how this weekend goes since he
was getting his treatment of the Rilonacept shot and his infusion of
Hizentra.Well, the good news is he got
on the Xbox with dad for a bit last night. And even though it totally wiped him out
again, he had a good time.He needed to
have some FUN!
He woke up briefly this morn to take meds and to tell me to
pack just in case.Yes, he feels like we
are going to have to go up to the hospital.
I really wanted to update everyone before we might have to
make this trip up there but also to share why we fight so hard against this
disease and are constantly trying to raise funds and awareness.There is a saying that many of us who deal
with chronic illness use….”don’t let the disease define you”…We try desperately not to do this, but this
disease has RE-defined who our son is in some ways…but it has also enhanced the
goodness and kindness in him.That is
one of the major gifts that come from great struggles.The issue is we cannot “escape” this disease….there
are constant “reminders” of its existence in our life.Every single week we have some sort of
medical appointment or therapy.Daily,
there are meds, injections, infusions, etc.And let’s face it, things are not the same in our family…some people
have drifted out of our lives (we just can’t keep up with them…) and others
have drifted into our lives.
We choose to celebrate the good that has come from this
disease.We have people in our lives that
are “with us” because they truly LOVE us!This is the most amazing gift and powers us forward.Our children share that love through their
actions and for that we are incredibly proud.
So we humbly but shamelessly ask for your continued
support.We need people like you in our
lives.We need people to continue
raising awareness so our children have a voice and to raise funds to support
research for a cure.But I also want to
share that funds are not only used for research…they are also used for other
amazing things that without support wouldn’t be possible.Here is where your dollars go:
Dancing at Camp
Camp Boggy Creek- “A Serious Fun Camp” that hosts JA Family
weekends and summer camp for our children.This camp gives us an opportunity to meet others whose lives are touched
by JA but more importantly, it gives are children the opportunity for safe,
medically supported fun.Kids just being
JA Family Fun Days – A group of JA families have initiated
hosting events around the state each month to give families the opportunity to
network and meet each other.The AF
helps with announcements and some of the food costs.
Florida’s JA Families Arthritis Foundation Facebook Page – a
place to announce activities and connect with others.
The National Juvenile Arthritis Conference – every year our
state helps fund families’ travel and registration costs to attend this
conference where the entire family learns more about JA, research, advocacy,
and networking.Many medical
professionals volunteer their time to come and present and to talk with
families about JA.Children have their
own classes and fun while adults are in their sessions.
The kids with JA directly impact our hearts, but there are also
many adults with autoimmune issues/rheumatoid arthritis and I am one of them.
These are just some of the reasons why Parker’s Purple
Playas participate in the annual AF Spring Walk.So please consider supporting us.You can join our team for free, help raise
funds, and/or simply make a donation.Here is the direct link to Parker’s page: