A Devestating Loss in Our Family

**MarshHen** · 05-19-2007, 04:23 PM

On April 24, we lost our precious 6 yr. old neice, Eryana, to kidney failure due to Sialidosis, a rare genetic disorder. At birth, Eryana was diagnosed as having downs. At age 4, she was diagnosed as having Geleophysic Dysplasia, and last summer she was found to have Sialidosis, which is rare and there is no known cure. Sialidosis is so rare, there are only a few cases known around the world and of the few cases reported, I think only one other child has lived as long as Eryana has as most die soon after birth. When her kidney's began to weaken at the end of the year, she began receiving dialysis daily at home, and even though she became so weak she couldn't walk anymore and had to use a wheelchair, her little spirit stayed strong as ever, and up until a short time before her passing, she regained enough strength to be able to take a few steps on her own and even sit in the floor by herself and play with her little brother, Anthony.

We were told by the doctors this last March that we still had a good year before we would loose her, but that wasn't meant to be and she took a turn for the worse on April 16. Her little body just couldn't take anymore and she drifted away from us peacefully.

I guess I didn't post about her illness simply because it was just so hard to accept it and everytime she had a setback, she would bounce back again and seem to beat the odds. Her little spirit was tireless and she was so full of love and life, we couldn't, wouldn't think about loosing her. We just never gave up hope.

It's been so hard for our family the past few weeks, and to be honest, I just haven't felt much like being online.

In Loving Memory

Eryana Nicole Jones

**MarshHen** · 05-19-2007, 04:32 PM

This picture was taken at her 6th birthday party which was celebrated in August because she was in the hospital in July when she actually turned 6.

**auntie2many** · 05-19-2007, 04:32 PM

Dear Carolyn, My heartfelt condolences go out to you at this time of grieving over little Eryana. She looks so precious in her picture. Her sweet spirit sounds like it poured out lots of love to all that knew her. May she rest in heaven now free from pain and may memories of her live on in your family.

auntie

**mom21ofeach** · 05-19-2007, 04:35 PM

You have my sympathies. I cannot even imagine how devistating it would be to lose a child. I sounds like your niece was a fighter....someone who defied the odds. Her picture is beautiful! Gorgeous blue eyes.

**fernykins** · 05-19-2007, 04:44 PM

I am so sorry for your loss.......... My prays are with you and your family
Fern

**Hollyhandi** · 05-19-2007, 04:52 PM

What a Beautiful child.
You have my heartfelt condolances.
I have a special place in my heart for children and people with Downs.
( my nephew Jeffery had Downs and died from lukemia)
People with Downs have a spirit that is the closest to Gods.
May she rest in peace with no more pain.
(((((Hugs to you MarsHen and your family )))))

**MarshHen** · 05-19-2007, 05:06 PM

Oh yes, she was a fighter, and it's her never give up spirit that's helping get us all through her loss. She also loved to give hugs and kisses to everyone she would meet. She is our little angel now. Running and playing, free from pain and totally healed. She was never able to talk plainly, but she loved to call me on the phone everyday to tell me what she was up to. LOL, especially if she were a little upset with momma or little brother Anthony. I just know she is telling it all right now!

**julieb** · 05-19-2007, 05:32 PM

My sympathy and condolences to your family. What a beautiful child. I have been blessed with knowing alot of children with disabilities and through my 19 years have just been amazed at the spirit these children possess. When our pastor talks of being childlike in your faith I often think of kids with disabilities. They have such faith in the goodness in other people. Obviously your niece had faith in you. I can just see her calling you to talk.

Now you will have faith in your little angel. She is free from pain and running having fun. I wonder who she is hugging and kissing in heaven?? Her body is totally healed and she is well. She only knows peace and love.

God bless you for being there for her. She knows........she knows how much you loved her. In this life their is nothing more important than that. Forget everything else she went through, just remember she was loved.

I will be praying for you and your family.

**Radish4ever** · 05-19-2007, 05:34 PM

Oh what a sweet, beautiful little angel. ((hugs)) and prayers. What a joy it must have been to have that sweetheart be a part of your life for the short time she graced this Earth! Thinking of you and your family...