Rare Disease Day 2013

Rare Disease Day 2013

Rare Disease Day is February 28, 2013.  It is about raising awareness about rare diseases & the impact that these rare diseases as on the patient's lives.  It is open to everyone to join- Patients & their Families.  This was first launched in 2008. It started as an European Event, but has became a world event.  The US joined in 2009.  Total of 63 countries are now participating in 2012.  

Ashleigh has a rare disease.  When we were told Ashleigh has Spastic Paraparesis, we never heard of it before that day.  I had to have her neurologist write it down.  I had no idea how to spell Paraparesis, which I do now.   It took us 8 years for a diagnosis.  That part was the hardest.  If you do not have kids or if you do have kids & they are completely healthy, then you do not know what we have gone through.  Hug your kids.  Cherish the moments with your kids.  Ashleigh has gone through 12 MRIs & she is not done.  She gets bloodwork done every 3 months to check her levels of the one medication.  It is a must.  This medication is a must.  

In the past many months, we have been updating my family as much as we can.  My brother, my parents, & my mother in law are all in the lope of everything.  The therapists that were in our home from the last company told us that we need a support system.  So, each week I make calls to update the family.  We also have a private group, which I post items or photos to our family members.  We also keep Sandy & Tim updated on Ashleigh, too.  They are in our "circle."

Those outside of the "circle" sometimes has problems understanding why we do this or that.  Like why Ashleigh is still in therapy?  Think about it.  Ash is 12.  She is in pain all the time.  Why is it not working?  How would you deal with that?  How would you deal with a disease that is not known?  That you have not met someone else with it.  You would act out.  The first time Ash was in the Family Based we had insurance issues & she went backwards.  She lost everything she learned.  Ashleigh has issues with keeping what she learns.  Prior to this, she was in the wrap around program.  Ash had one change after another change.  Ash does not handle changes well.  This made her go backwards.  We were in the Wrap Around Program before & she got better.  She was discharged.  We are finally getting somewhere.  Therapy takes time especially with a child like Ashleigh.  If Ashleigh has Autism, then we need to have her therapy differently.  Think about it.  We need to change things around. 

If people do not see Ashleigh regularly or not in years, then those people do not see what we see.  They do not see that her age of 12 is not her age.  What do I mean?  She may be 12, but she does not act 12.  Ash does dress herself, but in the morning, I am the one getting her belt on, shoes tied, making sure her hair is combed, deodorant is on, etc.  Ash does not watch shows for her age, but shows younger for her.  Ash does not like loud noises, which would put her into a tantrum.  I am not sure if tantrum is the correct word.  It is more like overwhelms her.

Some of these people outside of our "circle" will not understand what it is like to raise a special needs child.  My advice to them is to keep your opinions to yourself unless you are in our shoes!  Some of the people outside of our "circle" will understand & will ask questions.  I will be happy to answer them.  

                

We do not tell Ashleigh everything because of change.  Ashleigh does not handle change well.  Back in 2006, we had a lot of change happen.  My parents moved out of state.  I went back to work.  Shawn's work schedule changed.  Ashleigh's leg pains started.  I got hurt & had back surgery.  Ashleigh's classmate's dad died.  Ashleigh was so afraid I would die in the hospital from my back surgery.  This was the start of Ashleigh's bad behavior.  We handled it on our own for awhile.  We did good.  After we got pregnant with Ethan, Ashleigh got bad  I found help for Ashleigh.  We got her into the Wrap Around (first time).  It helped her.  She was discharged.  The second time Ash was then put into the Family Based program. When changes do occur & we know about it ahead of it, we tell Ashleigh many weeks before it happens so we can prepare her for whatever change will happen in her life.

If Ashleigh has a question about her disease, we have not lied to her.  We answer the question honestly for her.  We do not like it when she lies to us so we will not lie to her.  We are teaching our kids that honest is the best policy.  If I need help for one of my kids, I go find it.  With Ashleigh's behavior, when it got worse, I found her help.  I called around to get help, but no one would help a child with pain until I went to a place that I could get resources from & they helped me. I have always found resources in my community.  That is what they are there for.

We know Ashleigh will grow up to be a wonderful young lady.  She has a great heart.  She is kind, caring, & a great friend to those who she meet & those she is already friends with.  We will protect Ashleigh & our boys.

Have a great night!
Melissa