This year's NDSC 2014 Annual Convention had a wide variety of vendors in the vendor hall. We are going to feature some of the organizations which may be less familiar to many, but they are doing wonderful work, or creating wonderful items! We won't be able to feature everyone, so you might want to go to the convention next year and check them all out for yourself. It was inspirational to see so many passionate people following their dreams and blazing their way in the world!
Eli's heart was started by Eli Craig's mom and dad after he had open heart surgery in 2012. Seeing families in the hospital who had traveled to the Children's Hospital of Philadelphia from all around the country, some of whom were there for months at a time, Eli's mom and dad decided they needed to do something to help alleviate some of the financial strain on these families by creating a foundation to help with the travel expenses associated with getting their children the surgery they need. They ask people to donate frequent flyer miles, credit card reward points and (of course) cash is always accepted.
There were many vendors with dazzling signs and flashy displays designed to get your attention, but despite the simple red tablecloth, and Eli's heart banner hanging off the front of the table, there were many traffic jams at their table all day long. Maybe it was because it was such a unique idea and there were so many people that thought it was a great thing to do. Maybe it was many of the conference attendees had wished for some help when their child had surgery. Or maybe, just maybe, it was the best pr tool in the Eli's Heart toolbox.....Eli.
He was running around and making people smile and laugh every time I went past!
Best of luck and keep up the great work Eli's Heart!
Showing posts with label Inspirational Stories. Show all posts
Showing posts with label Inspirational Stories. Show all posts
Tuesday, August 5, 2014
Monday, April 14, 2014
Bryce's Battle with Acute Lymphoblastic Leukemia
Here is the story of Bryce's battle with ALL in the words of his mom, Julia.
Bryce Bartczak is a 3 1/2 year old little boy who is generous with his smiles, hugs and fist bumps. In January 2014 our lives took a crazy turn when we learned he had leukemia. Here is Bryce's story:
Monday, January 13,
2014, Bryce was taken to the pediatrician because it appeared he had another
ear infection. Bryce had tubes put in his ears in October but we were told he
could still get ear infections. Sure enough, he did have an ear infection and
was given an antibiotic. That evening I was holding Bryce's hand as we walked
into the play room and he slipped on a toy. Since I had his hand in mine he did
not fall or hit his head. I scooped him up in my arms because I thought he may
have been frightened by the slip. Bryce arched his back and would not stop
arching. Paul said he could see something in his mouth. I immediately began
abdominal thrusts and back blows. When Bryce lost consciousness and began
turning blue, I began rescue breathing. Bryce did start breathing by the time the
ambulance arrived. He had a chest X-ray at the ER and it showed he did not
aspirate and he appeared to be back to normal.
We took Bryce to the
pediatrician on Tuesday for a follow up. She reviewed the chest X-rays and
after we told her the story once again of what happened she felt it may not
have been a choking incident. We began the process of scheduling an appointment
with a neurologist.
In the following days
Bryce began looking shaky when he would stand up and he also began scooting on
his bottom to get from place to place. By Saturday he started refusing to walk
and wanted to be carried. On Monday, January 20, I called the pediatrician. She
said it may be a virus and give it 48 hours but call her if we noticed any
other changes.
On Tuesday Bryce woke
with a temperature. He should not have a temperature due to the antibiotic he
was on for the ear infection so Paul took Bryce back to the pediatrician. The
pediatrician said that some blood work was needed and she was able to get us in
at Hope Children's Hospital in Oak Lawn.
At Hope Children's
Hospital we learned Bryce had Acute Lymphoblastic Leukemia. It is in his bone
marrow but not in his spinal fluid. Bryce had many procedures and the
chemotherapy treatment was started. After 10 days (Tuesday, Jan 21-Thursday,
Jan30) at the hospital it was determined that Bryce's numbers were good enough
that we could bring him home. Bryce's course of treatment will be over the next
2 1/2 years.
Update:
Bryce has completed the
"induction phase" of his chemotherapy treatment. Unfortunately, his
bone marrow showed a higher percentage of leukemia cells than we expected. This
means that Bryce will need a more aggressive treatment plan. Bryce has Down
Syndrome which means he is at a greater risk for toxicity (side effects) and
now with the more aggressive treatment he will be an even higher risk.
Please continue to pray
for our family. It is going to be a long journey but it will be worth it when
the strongest guy I know is cured!
Love, Julia
Ambulance Ride
Some of you may know that Grandma Eileen Haase had her first ever ambulance ride...of course it was with Bryce. Bryce didn't want Grandma getting bored during her visit.
We are required to carry epi pens because Bryce could have an allergic reaction to the various chemo drugs. On Tuesday, March 4, Bryce appeared to be having problems breathing. Grandma and Bryce's school teacher were at home and acted quickly. Ms. Meghan administered the epi pen and Grandma called 911. Paul and I met the ambulance at the hospital. It was determined that Bryce was nauseated from the medications (he received 4 different chemo drugs within 24 hours) and it was causing him to gag and dry heave and appear to have problems breathing. We now give Bryce medicine to help with the nausea. No, things won't be boring for us for quite some time! Thank you for your continued prayers!
Spinal Time
Today's visit to the cancer center went so much better than last week! In this portion of treatment Bryce received spinals taps every week for four weeks (in addition to chemo through his port, in liquid form, pill form and shots). Last Monday Bryce's counts were very low. The team decided to give him platlets and then they would do the spinal. The platelets weren't available so they moved forward with the spinal which means they remove spinal fluid for testing and then insert a chemo drug. The spinal went well and since we had decided to return the next day for his platelets and red blood cells the other chemo drug was administered through his port. So, after arriving at 7:30 am we were all ready to leave at 4:30 pm. When the nurse began removing the access to his port, Bryce passed out. After having him checked by the doctor and waiting 30 minutes it was determined that he became upset, started to cry and due to his low counts he may have held his breath which contributed to his passing out. As we started to drive away from the cancer center Bryce started to cry and passed out again. Needless to say, Paul turned the car around and back to the cancer center we went. Bryce was admitted to the hospital where he was given IV fluids and red blood cells. This seemed to do the trick. Bryce had color in his face and was back to himself even though it was at 11pm. The following day Bryce received his platelets as well as an EKG and Echo of his heart. By 4 pm Tuesday, we were on our way back home.
Today, Bryce received the final spinal in this series and all went well. His counts are low but he did not receive any transfusions.
We want to thank everyone for their positive thoughts and prayers...and ask that you continue! Only a couple more years to go!
Universal Language
Bryce had a very long day at the cancer center this past
Monday, April 7. We arrived at 7:30 am. After it was determined that Bryce's
counts were just enough for him to receive the chemo, we had to wait for his
urine to reach a certain dilution before the chemo could be administered. That particular
chemo cannot stay in the kidneys or it will cause damage. So, after the chemo
was in his body the next step is to flush his system with IV fluids for several
hours.
Upon returning to the Day Room (where children stay when
receiving their chemo) after another restroom visit, Bryce saw a girl who was
about his age and of course he just knew she wanted to play with him. I was
trying to tell him we needed to find our own toys when one of the nurses asked
the little girl if Bryce could play with her. She said "si". Bryce
and I pulled up a chair to where she and her mother sat. The little girl and her
mom spoke Spanish. Bryce says some words but uses mostly signs. I don't know
any Spanish. And yet the four of us
played together for over an hour. We played with toy foods, animals, shape
sorters and puzzles. It was fun and we were all smiling.
I love how children just want to play. They don't care if
you have hair, what chemo you are hooked up to, or if you can speak their
language because for them play was the universal language. And play sure made
the time go by much faster!
Friday, November 22, 2013
Darius Rucker (aka Hootie of Hootie and the Blowfish) Does Good!
This is just one of those times when a video is worth a million words....
Monday, November 4, 2013
First Runner With Down Syndrome Finishes NYC Marathon
This is such a great story....but there are two special side notes that are even more uplifting than completing a marathon (his SECOND marathon, no less!).
1. He did it because he and another friend who were both non-runners decided to try something new!
2. Participating in a community activity with a friend (which is something that any 'typical' person would do with a friend) has had a profoundly positive impact on this young man's entire life!
It just warms my heart....and gives me hope for the future! Gotta love the Best Buddies Program!!!
Watch the video here
1. He did it because he and another friend who were both non-runners decided to try something new!
2. Participating in a community activity with a friend (which is something that any 'typical' person would do with a friend) has had a profoundly positive impact on this young man's entire life!
It just warms my heart....and gives me hope for the future! Gotta love the Best Buddies Program!!!
Watch the video here
Saturday, October 26, 2013
Overcomers
It's very coincidental that DIS just posted this video on YouTube....with the song 'Overcomers' as the soundtrack:
And then today, this blog post titled "Those with Down Syndrome Are Overcomers" was written/posted by Helen Middlebrook. Helen has been an online inspiration for many years...and what she writes is just so true!
And then today, this blog post titled "Those with Down Syndrome Are Overcomers" was written/posted by Helen Middlebrook. Helen has been an online inspiration for many years...and what she writes is just so true!
For years, I've been trying to get Deborah to swim. Deborah has Down syndrome, which has compromised her coordination. Since she was little I've looked for any physical activity that makes her use arms and legs together, in order to develop her neurological pathways.
Swimming is one of the best activities for this. It demands the use of arms and legs, without the nagging requirement that a child can walk.
Deborah has always liked to "go swimming." She just doesn't like the water. Any time we go into a pool, she wraps her legs around me like a Velcro chimpanzee. I have to peel her off of me before we can even attempt getting her to move in the water.
A few months ago, I heard about a visiting swimming teacher, John Ruffu (www.swim2johnguam.com), who guarantees he can teach a child how to swim in just 10 minutes a day for 10 days.
Although he's taught nearly 4,000 individuals, and many children with special needs, I thought Deborah might be the kid who would let me cash in on the money-back guarantee. I signed her up.
I'm not getting my money back.
Within minutes of getting in the pool with John, Deborah swam! It was a miracle!
Of course, nearly everything in life is miraculous: Birth. Crawling. Creeping. Walking. Talking. Swimming. It's just these skills happen so easily for most people, we forget how amazing they are.
But when you have a child with Down syndrome, you don't forget. Every day is a reminder of how precious the "normal" things in life are.
I didn't think about developmental milestones much until Deborah came into my life. I didn't think about the complexity of picking up a Cheerio until I had to teach her how to do it.
I didn't think about all the things that must be in place in the brain and body to take that amazing first step until her body failed to put those things in place on its own.
Deborah has taught me how amazing life is, and how amazing kids with Down syndrome are. They are overcomers from the womb.
Saturday, September 14, 2013
A Baby Gift...Fit for a Prince!
I don't know what I like better....
the painting
or the story!
(you will have to read it to see what this has to do with Down syndrome!)
Friday, August 23, 2013
Ft Lauderdale Brothers...a TN college student...and a lady who loves to dance!
Three great stories about adults with Down syndrome making their mark on the world!
First: A very heartwarming story about two brothers working in a kitchen...and it doesn't belong to their mom!
First: A very heartwarming story about two brothers working in a kitchen...and it doesn't belong to their mom!
Third: Get out the tissues for the next story about a California woman who loves to dance!
Thursday, August 15, 2013
A Girl and Her Goat....
This is such an awesome story on so many levels....the support and inclusion demonstrated by her community is inspiring!
Midway Dispatch: Big Sky High grad with Down syndrome feels the love at FFA/4-H auction
Friday, August 2, 2013
Ashley DeRamus...a name to know and remember
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