Down Syndrome: Raising Awareness and more!

I have been blessed to be matched with Toby. He has Down Syndrome and I have been running for
him since July 27, 2014. In this short time, he has planted a very special place in my heart and so has his family. To those who aren't aware of the I Run for Michael program and not involved in it, it may be hard to understand how this family has become so much a part of my life and why I am motivated to step up and raise awareness to Down Syndrome.

First, some facts:

  • Down Syndrome occurs when an individual has an extra copy of chromosome 21 - either full or partially. This genetic difference alters development.
  • There are three types of Down Syndrome - trisomy 21 (95% of cases), translocation (~4% of cases), and mosaicism (~1% of cases).
  • One in every 691 babies in the US is born with Down Syndrome.
  • The incidence of births of babies with Down Syndrome increases with the age of the mother but 80% of babies with Down Syndrome are born to women under 35.
  • People with Down Syndrome have an increased risk for congenital heart defects, respiratory problems, hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions.
  • Life expectancy for those with Down Syndrome has increased from 25 in 1983 to 60 today.
  • Quality educational programs, a good home environment, good health care, and support enables people with Down Syndrome to develop to their full potential. 

Meet Sam:

Sam was born in the US and his mom is an angel! Trust me, she is. I have known her for years. She left Maui to provide better care for Sam. Here is her story...

Being Sam's mom has been an adventure beyond anything I could imagine. While there are downs (and some of those downs last a long time) they sure do make the ups that much sweeter! On paper Sam is so far behind his peers it's almost a joke when we sit down for his well child visit & I have to answer three pages of questions like 'Can your child jump with both feet coming off the ground?' or 'Can your child write their name on a paper?' Sam is just learning how to crawl and is occasionally responding to his name when we call him. It can be a little depressing at those visits when we have to compare Sam to the average child, but Sam is nothing close to average! With that being said, SAM IS LEARNING TO CRAWL!!!!! It's the most amazing thing to see as he has so many physical and mental hurdles he has to overcome. The most challenging has been a debilitating seizure disorder that was so consuming he lost all his abilities as his little body was so bogged down seizing as many as 50 times a day for over a year. So no, he can't jump with both feet off the ground, but he is learning how to crawl! SAM WILL OCCASIONALLY RESPOND TO HIS NAME!!! While his peers are writing their names on paper, Sam has been through 3 eye glass prescriptions, 2 eye surgeries, countless hearing tests, spinal x-rays, brain MRI's, he travels with & uses oxygen, has had half a dozen EEG's, 3 heart ECHO's, 4 EKG's, 3 sleep studies, endless blood tests, wears glasses, wears leg braces, wears a stomach binder and met with every pediatric specialist, LITERALLY, every specialist in both Hawaii & California (including a few in Utah and Connecticut). All of which before his 3rd birthday. Yet after all that, he smiles, laughs, and is learning to crawl & respond to his name!!!!! Three cheers for Sam! The secret to being Sam's mom is perspective...it's hard tell the other parent at the park that Sam is almost three after she guessed he was the same age as her 9 month old, but to see how far Sam has come, knowing the mountains he has faced and overcome in his short little life is truly incredible!

Meet Toby:
Connected no matter how many miles separate us

Toby is my running buddy and I adore him! He was born in the Ukraine and his first years have been very different from Sam's. Since no one can tell a story like a mom, here is his story...from his mom.

Our family decided to pursue adopting a child in 2009.  Basically, our oldest daughter was begging us to adopt a little baby, but we kept telling her that we did not have the money to do so.  One day, I felt the Lord telling me that, no, WE did not have the resources, but HE was more than able to make it happen.  Originally, we pursued a typical adoption of a typical child.  However, unbeknownst to each other, the Lord was working on our hearts, softening us to the idea of adopting a child with special needs, specifically Down Syndrome.  I heard my husband telling his friend one day that he was thinking of this and I said that God had been telling me the same thing.  We had recently heard of a local couple who adopted a little girl from Ukraine with Down Syndrome, so I tracked them down to talk about the process.  They told us that while they were over there, they fell in love with a little boy and vowed to come home and find a family for him.  In fact they said that if they didn't find one by December, it was now October, they would go back to get him themselves.  Most children living in orphanages for as long as he had been give up all hope and turn inward.  Toby, or Misha as he was called in Ukraine, had not done so!  That is what made such an impression on this family.  Although he had been in a desolate orphanage, completely neglected, for 3 years, he was still trying to make connections with visitors...smiling at them, reaching out for hugs or to even be held.  Upon seeing a picture of him, our family immediately fell in love and were determined to do whatever it took to rescue him.  Time, however, was not on our side. In most Eastern European countries, children with disabilities are believed to be evil.  Parents are told that if they bring them home, evil will never leave their houses.  Needless to say, most parents immediately relinquish their rights after birth, as was the case with Toby.  He went from the hospital straight to the orphanage.  Then, at the age of 4, usually right on their 4th birthday, they are transferred to an adult mental institution, where they are starved, tied to cribs and most of them do not survive more than a year and where they are no longer available for adoption.  We found out about Misha in October and his 4th birthday was in August.  We had a lot of work to do and a lot of money to raise in a relatively short amount of time!  But, just as God had spoken to me months before...HE was able!!  He provided us with $30,000 in 3 months time, during the holiday season, in the middle of a recession!  Talk about a MIRACLE!!!
When my husband and I went over to Ukraine, we saw firsthand just how they treat these children.  First of all, we realized that there is no such thing as handicapped ANYTHING over there because you see NO handicapped people ANYWHERE!!  Even in the orphanage, where no child is treated well, those with disabilities are treated even WORSE!  They are left in cribs all day long, with no toys.  There are toys around, but they are neatly displayed on shelves, not for the children to play with.  Sometimes, they are brought to cribs outside, but ONLY around back so they will not be seen!  When you walk in to the orphanage, it is eerily quiet...there are over 100 children residing there, but not one sound is heard.  They have learned that crying is useless because nobody comforts them...  To this day, 4 years later, my son doesn't cry when he gets hurt.  I try to tell him that it is ok, but he gets angry.  He also is very disturbed when he does hear a baby cry.  We have to assure him that the baby is ok and it's mommy is taking care of him/her.

We brought Toby home just weeks before his 4th birthday.  He weighed 18 lbs., couldn't walk, talk and drank from a bottle.  Now, 4 years later, I can't keep up with him.  He is almost 50 pounds, eats like a champ and LOVES to run, climb, dance and BOUNCE.  His speech has been slow, but he picks up sign language faster than I can teach him.  He missed out on so much during those crucial formative years, so it is hard to tell if his struggles are from the Down Syndrome or from 4 years of neglect.  He has a stubborn streak, which I have to remind myself is how he survived those years.  At times, it overwhelms me to think about all that he endured over there, and I will never even know the half of it.  I get so sad for him and so angry at those who hurt him.  But then, he comes and smiles with that smile that just melts your heart and gives me one of his slobbery kisses and I realize that he has forgiven, forgotten and lives for today.  Then I ask myself, who is it that has the disability here?!?

The strength and love demonstrated by these two moms are beyond inspiring. How can you not want to reach out to them and tell them how amazing they are striving to provide their darling children with the best care and to be INCLUDED?

How you can make a difference:

It is one thing to bring awareness but I hope to inspire you to take it one step further. You can be that vital support to another parent or individual with Down Syndrome. Don't look away and don't be afraid to go over, say hi, and include them in your day. As a mom, I love that my daughter is getting to know Toby and experience life through his eyes every now and then. I hope that opens her heart to the love in mine and she can be a shining difference in some one's life one day. Okay, lots of someones!

Sign up at I Run for Micheal to be matched with your own buddy. This group represents all walks of life and all types of disabilities. Trust me, you'll match will be made in Heaven and be prepared, it is a long wait for the runner. Have a child with special needs or know someone who does? Tell them about the group. They get matched quite quickly!

But beyond that, I am also motivated to help Toby's parents in the dream of adopting another child with Down Syndrome from Bulgaria. Beyond the financial burdens, they are going through the emotional up's and down's of legal filings, etc. that go beyond what I was planning on writing today. You may be asking how can you can help? It is easy. They have set up a Lifesong grant to help them raise funds to cover this adoption, which looks like it will cost even more than Toby's. This is one of many fundraisers the family has done to help bring a special child into a loving home - to give them a fighting chance at a better life.

To Donate:

1. Go to www.lifesongfororphans.org/give/donate

2. Select Adoption Funding, Family Specific. The family code is 4644 and the family name is McDonald.

3. Please note that PayPal will charge an administrative fee (2.9% + $.30 USD per transaction). Your donation will be decreased by the amount of this fee.

If you can't donate, that is fine. But I do humbly ask that you share this post in order to bring awareness to Down Syndrome and how children are treated in other countries. Please, be part of the goodness of the world. These children have so much to offer and they are our future.

Love and hugs to you all!

Daily Gratitude: I am thankful to those who read this post from start to end. Mahalo.
Daily Affirmation: I am doing God's work in raising awareness about Down Syndrome.

P.S. Out of loving respect to the families, I opted to not share photos of Sam or Toby as I feel you can still hear their story without seeing their faces.

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