About Down Syndrome
About Raphael
Seventh grader
Loves music
Chicken Nuggets are the best!
Amazing Little Bro
Swims for Winchester Waves
Recent Events
Raleigh Auto Show
02.15.20
Checking out all the cars
Welcome
"I praise You for I am awesomely, wondrously, made; Your work is wonderful; I know it very well."
But Jesus called for them, saying, “Permit the children to come to Me, and do not hinder them, for the kingdom of God belongs to such as these. Luke 18:16
Missing school
03.21.2020- ????
March closed school due to Covid. Raphael misses it!
Broken leg all healed up
07.2020
Had a weak spot in the fibula that broke, but it healed up and he is back on his feet!
Raphael joined the family and took us all by storm. We chose his name which is Hebrew for The Lord Heals well before he was born and we had no idea how appropriate that would be. He had to teach the doctors and nurses a few things before he could come home, but home he came and took over our hearts in ways we never could have imagined. We know that the Hebrews believe in an angel by the name of Raphael, who was known to be kind to travelers and was a healing angel. Indeed he is.
Raphael was diagnosed with Down Syndrome shortly after he was born. Down Syndrome goes by the name Trisomy 21, as he has an extra chromosome on the 21st one. This little extra addition into his makeup can cause all kinds of complications, and impacts all of his systems in some way. We have been blessed in that some of the more severe complications such as heart defects and infant leukemia have not been a part of his story. However, he has had a hard time with his breathing since he was born and this has led to wide spread delays in his development. He is catching up though! If you have questions about Down Syndrome please be completely comfortable in asking!
Just last year Raphael was officially diagnosed with Autism Spectrum Disorder as well. While this disorder effects many children the percentage of children with Down Syndrome and Autism is quite a bit higher than the the typcial population. This disorder impacts him neurologically, it has inhibitted his ability to talk as well. So if you meet Raphael be ready for a big smile and maybe even a greeting on his device that works to help him communicate, called an AAC. He especially like to tell us we are being silly or that he really needs some ice cream.
Raphael loves to swim and our neighborhood swim team has been welcoming for him to be a part. Go Winchester Waves! He swims with his brother and loves the team so much.
Raphael is a huge fan of music and dancing. He has also learned some sign language and enjoys praising the Lord in sign songs.
Recent surveys were taken of young people with Down Syndrome, and 99% of them reported being happy with their lives. 97% of them claimed to be happy with who they are! (Find me any other population with those satisfaction rates and sign me up!!)
97% of their siblings claimed that they wouldn’t exchange their Down Syndrome sibling for a typical sibling. 88% of their siblings claim that having them in their lives made them better people.
Yet, 90% of pregnant women who are tested choose to abort their baby with Down Syndrome and testing has become easier and earlier, so many expect the abortion numbers to climb.
This is seriously sad.
