Hi , my name is Malky and I have the privilege of raising two beautiful girls with Down syndrome . My story goes back to almost 15 years ago when Rachel a beautiful baby born with Down’s syndrome was placed in our home until the family felt capable of taking care of her multiple medical needs. Now 15 years ,7 surgeries and many many hospital visits and procedures later, Rachel is still a very beloved member of our family. When Rachel was 11 years old, a friend of ours who fostered an adorable 7 year old girl with Down syndrome (and similar to Rachel , many many medical issues, and specialty care) was diagnosed with a brain tumor . This friend begged me to take her daughter until after her brain surgery and “take care of her just as you do for Rachel, she’s so delicate, please love her and take care of her as if she’s your own, I’ll pay you back “ she promised “probably not with money , but “I’ll pay you , you will see”. Those were her final words to me. She passed away shortly after the surgery. Although it has been a nightmare of a journey , Chedva has since become a most beloved part of our family! She’s tiny and mighty!! Although this June she will celebrate her 11’th birthday she’s the size of a 4 year old . Chedva is a charming girl who loves to sing, dance, exercise, paint , and act. She’s everyone’s favorite and puts a smile on the face of everyone seeing her. Due to her very severe chronic lung disease, Chedva is in the hospital very often sometimes for long periods of time. The doctors and nurses adore her. She’s easily the favorite patient and a huge celebrity SHOUT OUT TO ALL HER AMAZING DOCTORS ,NURSES , CHILDLIFE TEAM , AT COLUMBIA CHILDREN’S HOSPITAL /CHONY. Chedva gets VIP service as soon as she comes through the door , thank goodness ,because that door has been revolving continuously . Chedva is quite often 02 dependent especially all summer long. She gets esophageal dilations approximately every three month! Both girls sleep with Bibpap and oxygen and are fully feeding tube dependent.

Taking care of these two beautiful souls has been a humbling experience. Every day is a learning day ( sorry doctors I AM in school, that’s why I can’t go back to school yet). The smiles through the annoying and painful weekly ivig ( mom be careful with my sister they each say while holding hands as I administer the needles one girl at a time) . The chest vest treatments they do together helping each other administer nebulizers and cayston treatments while vibrating holding hands. Them hugging every day after school and telling each other not to worry “ I’ll come save you”. There’s soooo much joy , so much love and so much pain. I wish I can protect them from all those illnesses they come down with, from all the treatments and surgeries,,, and though I can’t , I CAN help them have each day the best day of their life. I CAN give them hugs and love and positivity. I CAN make sure that they are content and as healthy as can possibly be.

My dream is to give my girlies a beautiful summer in a camp catered to their needs. For them to go swimming and play in a safe and healthy environment. And my dream is to hopefully recharge a bit while they get the care they need. So I can continue on this incredibly beautiful but challenging journey.

Those of you who know me, know that I don’t ask often. I thrive on giving , but I can’t do this alone . A camp like the one we need is approximately $20,000 a child!!!! Anything you can donate will be incredibly appreciated and exclusively used for their needs.

May you all know of only good health and happiness.