My Tia Marie was such an amazing little angel from the moment she was born 11/21/13 and what an amazing new journey began. She was in the Nicu for a Couple weeks and the doctors were puzzled until we met Dr. Krantz from Chop and his assistant Sarah.

Once they met us and Tia everything from her head to her toes was CdLS and although very very new to the CdLS community we had a place and home with the families we connected with and clubs joined and just everything was in place! I did all I was told and educated on! Physical therapy and of course speech and sign language classes. We spent a lot of our days at CHOP but overall her “medical” diagnosis were treated with several surgeries and here we were she’s almost one and look how far she had come! She was doing amazing and although small she sure was mighty and sassy! I loved every moment of it! She really made her mark on our family and our whole world!

Her 1st bday was great and we had a party at our house she was one! We made it through a long year but she really was thriving! She even learned to sign the word “more” which I just loved when she did it!

She was doing amazing nothing was holding her back.On the morning of March 11th, 2015 I was heading out to my dad’s hip surgery and she was home with her older sister and Albuela. After about an hour I got the call no parent ever wants! It was a scream that something’s wrong and Tia has to go to the hospital! I ran to my home not far from hospital thank God I made it to her before the ambulance made it they arrived to on site as my neighbor was trying CPR and things just weren’t ok she wasn’t ok. As I proceed to the ambulance with medics and Tia in my view I fell and prayed and prayed I almost don’t remember much while getting to the ER! I felt sick and just knew this was different. As I exit the ambulance Tia in front we walked into an ER and surrounded by 25 doctors all ready to bring her back! They all tried over and over but Tias heart wasn’t strong enough and she passed. The whole team in tears! Me and my husband and family all were able to stay with her to say some “goodbyes” the hospital even gave us a memory box bc my older daughter really was also going thru a lot seeing all this unfold just at age 7 she was in need of her mom and I was falling apart! I didn’t want to leave my Tia but had to let her go!

I held my girl and she looked like she was asleep and at peace so and beautiful! I lost a big part of me when she died and one day we will be reunited in heaven! So many people came out and supported us during this time even moms of other CdLS families traveled a distance to pay respects to us! I still have my angel pendant and CdLS Angel coins given to me! I cherish everything about the CdLS community and appreciate the support and love they show it’s good to know we aren’t alone!

My Tia Marie is missed every day I still struggle as do other moms dads and families. We are forever changed losing her but she lives on thru us and just like others I wanted more time! I feel cheated because she was only 15 months old when God took her home. I know she’s in Heaven doing things she never could do here on earth.

The CdLS angels and all families we connected with will forever be in my heart and memories for life! I know I am not alone when I am able to relate to so many who walk this journey of loss. One thing is for sure LOVE never dies and our babies are all up there spreading their wings and shining bright!

I love you Tia Marie forever my angel and baby girl

Love Mommy, Daddy, sissy, ur baby brother and family