Holden

Super hero painting

Our Down Syndrome story!! Our story is a little different like each and every one but it's our story which makes it special!! The words Down syndrome never bothered me, I knew that no matter what I would love my child all the same so when it came to the optional testing during my pregnancy I opted out. The doctor wasn't worried and said your so young your chances are slim and I thought it still wouldn't matter either way.

But our story really begins before that... First the summer before I became pregnant I was working at a camp as a life guard and had the pleasure of working with a young man who had both Down Syndrome and autism. I created a sweet bond with man over the week and his love and spirit has stayed with me over the years!

Second while I was pregnant I went as an extra chaperone to a special olympics event where I saw the cutest 2 or 3 year old with DS wearing khaki pants and a burgundy sweater with a teddy bear on it running along side the bigger kids on the track and I remember saying out loud 'I hope some day when people look at my little boy think oh how cute'.

Third while waiting in the OBGYN office for my appointment I started talking to another expecting mom, she shared with me that she knew her daughter was going to have Down syndrome and she knew her life was about to change so much. That was the day I was offered the prenatal testing and yet I knew at that moment it wouldn't matter so I said no if it's not necessary then I'll pass.

Fast forward a few months to my surprise emergency c-section, the day we would finally meet this little man! I had been in the hospital for observation as my blood pressure was rather high over the last few weeks and was actually preparing to return home to got to my younger brothers graduation when surprise... Holden decided it was time to come.

Unfortunately he had turned himself sideways and I was rushed to the OR and then he was here, all 7.6 pounds and 20 inches!! He was quickly sent upstairs to the nursery with my mom. I didn't even get to see him up close just a glance as they rolled him out. I was then sent to recovery where my mom and the doctors came in with the news. My mom sat down beside me and said "Sweetie he's beautiful, he's 7.6 pounds and perfect but the doctors think he may have Down syndrome ". I don't think the doctors were expecting the response I followed with 'oh well we can handle that'.

They started to tell me what this could mean for our future and I stopped them and asked 'what does this mean for right now?'

God had prepared the path for Holden to be a part of our lives and I would never change on hair on his head or chromosome in his body! I can't imagine life without this little boy! The story he is making of his life is beautiful. We have learned so much through having Holden! We have loved and been loved by so many because of Holden!!

Like many families we have our ups and downs and we have faced many challenges but Holden never gives up an inspired me to see the positive side of it all!!

Vicky- Survivor of Domestic Violence

Tiger Painting

Vicky escaped being murdered by the woman who raised her. She was beaten, drowned, burned, assaulted, stabbed, and forced into a basement. Escaping mother, finding what she thought was love, would turn violent and very much the same as her childhood.

When I met Vicky it was through her love for her children and hearing these stories from her past made me feel so inspired! I had to celebrate her!

Vicky is a warrior of life not only because she made it through these things but because she didn't let her past define who she would become once she became a mother. In fact three of her children are involved in the War Paint Project as recipients; Kay'd, Cody and Lexi have a mother who has been through hell and back but doesn't allow a moment of her past to interfere with her life now.

She hopes to write a book, and I would love to help her. She is also in the process of creating grief counseling for others. She is my friend and I am so grateful she is allowing me to paint for her. 

Amanda

Elephant Brain Scan - for AVL TBI

Meet Amanda 
Warrior, Survivor, Superhero 
A story about AVM and Overcoming All

From Amanda------.
When my mom was on the road with my dad, and I was staying with my aunt, I got a headache that would not go away. When my mom got back, she took me to Warsaw hospital, they did a cat scan and said that I had an abnormality and they didn't know what it was.

They transported me to Women and children's hospital by ambulance and I stayed there for over a month, getting tests run, a radiation treatment, and they said the same thing as Warsaw, they referred me to Dr. Hopkins at Millard Fillmore Gates circle and he said that I had an AVM Vein of Galen Malformation. He gave me a neurologist, set up an appointment for an embolization, and I started my journey of numerous embolization procedures and 2 Gama knife surgeries.

I had to go for a general diploma, instead of continuing my classes at Boces, but graduated with my class. I Started courses at GCC, and was on the Dean's and president's list while missing classes to go for procedures.

They obliterated my AVM but my brain swelled during the last procedure, causing me to not be able to look up anymore, but I am blessed to have that, some tiny scars, and the invisible effects remaining.

At a couple dark times I thought that I would not be able to hold a job, or function at all, but I was able overcome my fears, get my bachelor's degree, came close to my Master's degree but I got two F's and got dropped from the program, but I won't let those grades keep me down, I will get my Master's so I can help my clients over come their addictions and own TBIs.

I help people with addictions, mental health illnesses, and TBI overcome their addictions, learn coping strategies, get jobs, overcome anxiety

Prayers for Aubrey

Keyboard painting

Follow Aubrey's Journey. Just a little girl beating the odd's, living each day with Cornelia deLange Syndrome

Small but mighty for sure! She inspires me to be the best mom possible every single day! Life is crazy and complicated with her and all of her needs but I wouldn't change it for the world she has taught me so much about life and I'm very fortunate to be her mom.

Vincent

Eagle Painting for throat cancer

From Jennifer, his daughter..... 
This is my father and I during the father daughter dance at my wedding. Since his second bought of Chemotherapy and radiation he has cut himself off from talking to everyone, his depression has taken over. He has mouth and throat cancer. He was recently told they may not have removed all of it and he has chosen not to fight it this time around. He said if it was just chemo he would do it but the radiation made it so he has no saliva glands any longer. He has suffered a heart attack has had a feeding tube that was just removed a few months ago. He only weighs now 117 lbs and is 5 ft 11 inches I have seen him waste away to nothing, and I understand why he doesn't want to go threw anymore pain and torture.

This Eagle Painting will be a symbol of his fight to remain in everyone's lives, because it shows he's always being loved, supported, and celebrated, even when he's not around.

Prayers for Julia

Ballet painting for childhood cancer

Meet Julia
Warrior of Childhood Cancer of the eyes
Painting Request--Ballet themed

From Mom.
Julia is outwardly your typical adorable 3 year old! She loves puppies, princesses, rain boots, and mud! She adores her two older brothers and wants to be a firefighter when she grows up.

Julia was diagnosed with cancer in both of her eyes just shy of 18 months old. At diagnosis her tumors were graded the most severe and our local Children’s hospital of Wisconsin does not treat her type of cancer as it is so rare. We were told that we had 2 hours to board a plane and get Julia to New York to see a Retinoblastoma expert!

Julia has Bilateral Retinoblastoma(both eyes) she has one remaining eye as her right eye was removed to save her life. She has 30% vision remaining in her left and only eye. She sees the world better than any sighted person, she only sees the world with joy. She is definitely a special gift that at just 3 years old she shares humor and Compassion all through her sense of the world without even needing much sight.

She is truly inspiring and she is so proud of her differences, as we all should be.

Prayers for Bella

Bella's Bumbas for spina bifida

Photo and Story coming soon

Robyn's Mom

Warrior fighting cancer

Painting- Angel Wings Hummingbird and Butterfly

 

Her name is Rosemary Markiewicz. She has Pancreatic cancer. Been fighting for 2 1/2 years. My mom is so Strong and So positive. She has a heart of Gold and would do anything to help anyone. She loves very deep. Always a hard worker. She is a Hero to my daughter which she wrote about in a public speaking class in school. She is just so inspiring herself for so many reason, you cant help but Love her and who She is

 

Anastasia's Army

Warrior of Optic Nerve glioma

Painting- A Day At The Zoo with Mom 

m Mom🎗️🦋
Anastasia was diagnosed with an Optic Nerve Glioma at 8 months old, on December 20th, right before her first Christmas, when she suddenly went completely blind. The tumor is inoperable, but a biopsy was done to determine its grade. Thankfully, so we thought, it was benign. She had a mediport placed in her chest and she began chemotherapy. When her next MRI was done, her tumor grew significantly. We changed Chemotherapy, but the tumor was resistant. Anastasia underwent another biopsy, yet it still showed benign.

By September 2017, Anastasia failed almost all standard chemotherapy and her tumor was now over 9cm large. We packed up and went to NYC to have a surgery to remove part of ths tumor and do molecular testing. By this time, Anastasia would hardly wake up. She had hydrocephalus and a shunt was placed and 50% of the tumor was resected.

During the surgery, anastasias pituitary gland was destroyed, causing her to have adrenal deficiency, hypothyroidism and Diabestes insipidus (not insulin related, her body can not regulate water so without medication, she will dehydrate.)

Well, after being released, Anastasia became severely dehydrated and developed a large blood clot in her brain that landed her back in the hospital. She eventually lost her ability to move her left side, she couldn't walk, sit or talk anymore. She had a Gtube placed because she refused to eat or drink. She lost tons of weight.

December 2017, we were told that all of the tumor that was resected in October had grown back and that they didnt believe Ana would live much longer. Her surgeon told us he has never seen a tumor grow so fast. We didnt understand how this benign tumor could be doing this to our daughter, but we refused to give up. We found out Anastasia had a rare mutation in her tumor and options were limited.

We spent yet another Christmas In the hospital, but Anastasia always seemed to find a reason to smile.

In January 2018, she started to eat and drink and fight back. The tumor was stable. By the end of feburary, after 4 months in the hospital, we were released and by April, we finally got to go back to our home.

Unfortunately, just a few weeks at home, Ana's MRI showed the tumor was growing again. So we packed up and headed back to NYC. At this point, Anastasia had failed all standard Chemorherapy so she began on a trial that was for adults at Sloan Kettering that targeted her mutation. Miraculously, it was working and working better than anyone expected. Her tumor shrunk up to 75% in 10 months. She was becoming stronger every day, talking non stop. She spent her first Christmas at home. Everything was going perfect. This was her year. Until 2 weeks ago, they told us her tumor had grown 20%. We couldn't believe it.she was doing too well and she still is.

Sloan didnt have anymore options left for her and NYU is trying to get her on a drug that's not for her mutation, but it's the only thing that's left.

She will undergo another biopsy on Tuesday, making that her 5th brain surgery, 9th surgery total.