My daughter has a rare blood disorder called idiopathic thrombocytopenic purpura (immune), which causes her immune system to attack and destroy her platelets. As a result, she bleeds spontaneously. A few weeks ago, her eye hemorrhaged—half of it filled with blood. Today, she had a nosebleed that lasted five hours.
She’s learned to recognize when the bleeding is about to start. She quietly gathers her supplies: tissues, a trash bag, a puke bucket for when she swallows too much blood and vomits, gauze, and cold packs. She’s only four years old.
For nearly three years, I’ve managed to convince myself that while she is sick, it wasn’t that serious. But last week, we spent four days in the hospital due to severe anemia and zero detectable platelets. It hit me—she is that sick. I understand now.
She’s receiving a wish. She’s getting worse. She’s getting a wish because she really is that sick.
We’ve tried every treatment available for her condition. Nothing works. Nothing makes it better. And my heart is broken.
Comments
Extremely sorry to read this
I’m so sorry. Praying for you and your family. I hope she has an amazing experience with her wish and I pray that she gets better soon
My heart breaks for you mom. I can’t imagine the heartache you, your daughter and loved ones are experiencing. There aren’t words that I can provide but I hope the time you have with your daughter is filled with love and happiness. Sending you a warm hug
Im so sorry guys. So sad that she is so used to the symptoms that she knows what to expect and how to prepare. Little kids are incredibly resilient. I’m hoping she can get into remission and live a happy long life where she’ll always remember her wish.
So sorry you’re dealing with this, mom. I know there’s nothing I can say to make you feel better, but I’m sending love and hugs your way. ❤️
I’m so sorry. I spent all my childhood in the Children’s Hospital and friends of mine there, the regulars were also Make A Wish Kids. It always broke my heart seeing how sick they were. I was too but I truly felt for them. To see the four regulars one night playing card games to win who would get the extra pillow so they could breathe better sleeping was truly heart wrenching.
One thing not all of those kids had is a parent or two parents there for them always so just the fact that your daughter has her mother there through everything, I know means the world to her.
Mine was always there with me, through everything. For weeks at a time in hospital, never left my side. And I will appreciate that, and her never wavering love, ALWAYS.
All the sick kids want, is to feel no pain and smile and laugh at normal, fun things. To them being sick is normal. And you being with her is a gift from above. ♥️😘
I can’t begin to understand what you’re going through, I can’t fathom how much strength it takes to be there for your child every day. You’re doing everything that can be done—loving them, comforting them, showing up. That matters more than anything. You don’t have to be perfect, just present, and that’s exactly what your child needs. She sounds incredibly brave and confident. Children amaze us sometimes… all the time. There will be gifts she gives you in the form of life lessons although they may be impossible to recognize under the current situation.
Your daughter is and will be well cared for, in this life and the next. My heart aches for you sir. I have a different appreciation for the twilight just starting in my region of the world this morning. Your story gave me this heightened appreciation for the day… dven if only fleeting. I like to think your family and daughter have the power to do this with every day she has with you, us and the world around her.
I hope you find comfort and peace.
I am so sorry, this is bringing tears to my eyes, this is such a horrible thing for you all to be going through. How absolutely heart breaking.
As a parent to two young children this has affected me in a way I rarely get. I’m sorry this happened and I’m heartbroken that a 4 year old is having to handle this in such a grown up manner. X
I’m so sorry. My heart broke reading this. I can’t imagine what you and your family are going through. I want nothing but love and peace for your family during this time. Love your daughter as hard as you can ❤️
This breaks my mum heart I’m so sorry.
I’m so sorry to hear this. I have this disorder myself and it’s such a scary diagnosis. Your daughter sounds like a great little girl and I hope her condition will improve soon. They might just feel she deserves it after being such a trooper for such a long time, we all need cheering up sometimes, especially with a chronic illness.
Are you in the official ITP-Platelet Disorder Support group on Facebook? You probably know about it, but I wanted to mention it just in case. There are so many of us there, parents as well as patients and everyone is so supportive. Thinking of you and sending hugs to you both ❤️