Grace, 4, was diagnosed with a rare congenital heart condition called Tetrology Of Fallot With Absent Pulmonary Valve. It’s complicated, and it has resulted in this sweet young lady spending a lot of time undergoing various tests and procedures. But, she’s strong! “To be as little as she is but have the endurance some adults can’t even reach!” her mom says. “She’s amazing!” We agree.

Grace loves spending time outdoors and swimming in warm water! She also loves fun music and movies.

The Sandbox has been able to provide Grace’s family with opportunities to bond and connecting with other families in our community who understand what they are going through. They’ve received support through the holidays and throughout the year.

“The Sandbox has helped my family at very difficult times, and we’re forever thankful!”

Meet Maddie. Maddie is almost 15 and in high school. She was diagnosed with Behcets Disease (main illness), POTS , Rhuematoid Arthritis, GERD, Fibromayalga, Colitis, Chronic Migraines & Fatigue, and Nonepileptic Seizures! She also gets Remicade Infusions every 4 weeks and has to take 15+ pills a day just to be able to function like others. Behcets is a very rare autoimmune disease. Only 1 out of 100,000 people have Behcets. It has many symptoms that come with it, because Behcets goes anywhere and everywhere the blood flows.

Chronic illnesses often have stereotypes. People think that they have to see something wrong with you to be able to believe you. With her illness, most of her suffering isn’t visible. She can put on makeup, style her hair and wear nice clothes and hide what she deals with on a daily basis.

But her reality doesn’t stop her. She enjoys hanging out with family and friends and going on adventures and traveling. She just recently learned how to live life to the fullest even with a chronic illness. “The pain may never go away,” she says, “but that doesn’t mean you can’t be positive!”

Meet Kaylin. She’s 16 months old, and she’s also a twin. She was born at 32 weeks, and she stayed in the NICU for 10 weeks experiencing many complications. Later she was diagnosed with extremely rare blood condition called diamond-blackfan. With her condition (which only affects 700-1,000 people worldwide) she is not able to make her own red blood cells and she has to have blood transfusions every 2 to 4 weeks. She has had 24 so far and her very first one was when she was three days old! Her parents have almost lost her 4 times and she has been hospitalized 6 times. There is no known cure for her condition, which causes other issues with her liver, kidneys, heart and more. A runny nose has the potential of putting her in the hospital. She is now in the beginning stages of a bone marrow transplant.

Despite all of this, she doesn’t let it hold her back. She is still as rambunctious as a 16 month old baby can be! Her family loves her unconditionally, and The Sandbox has been there to love and support them on their journey.

 

 

Meet Ashley. She may be familiar to many of you as she is one of our HERO families. Ashley and her mom, Kim, loved The Sandbox and found a family of support here. When Ashley passed a couple of years ago, her mom was faced with the challenge of with learning to live without Ashley. Learning to live again after the loss of a child is not an easy task. It takes time, patience, support and perhaps permission to just live differently. Kim shares, “Ashley is my hero, because she was so strong and had such a loving heart. She always kept her spirits,even when I feel like mine were dying. She would hold me and tell me mom I will be with the angels and do not be upset, because someday we will be together again.”

With The Sandbox’s CARRE program, we are able to support families, honor the memory of our Sandbox kids, include these families in all we offer , and give them a place where they will always be welcome to share, talk about their loved one and celebrate their life.

CC, who will turn four in May, was diagnosed with Methachromatic Leukodystrophy last year. “We had never heard of this word before and it instantly became a part of our every single thought, plan, prayer – just everything. The doctor said she had 3-5 more years to live. We were devastated and heartbroken – and still are,” shares CC’s mom. The Casey family continues to show grace and strength as they live each day understanding CC’s prognosis. They strive to keep life “normal” for their family. Their goal now is to keep CC as comfortable as they can and build as many memories as possible for their family. They find those opportunities and that support in The Sandbox.