Dear Hollywood,

As a mother of three rare and undiagnosed children and the Co-founder of the Rare & Undiagnosed Network (RUN), thank you for making the movie “Miracles From Heaven” with Jennifer Garner. It is the real-life story of Annabel, who suffered from a rare disease. We are thankful to you for raising awareness for rare diseases.  I believe in the power of prayer and I believe in the power of God. My daughter saw the white light and a blue light during one of her four cranial surgeries. She chose the blue light, her mother, over the white light, Heaven. I am a huge believer in miracles and in Heaven. However, the message you are sending that rare diseases can be cured by miracles is very disheartening. It is a wonderful story for the Beam family. God blessed them with a Hollywood ending. Unfortunately, the majority of rare families will not have a Hollywood ending.

I worked in Hollywood for many years before I became a mother. I am a huge fan of Jennifer Garner as well as all movies. When I heard about the “Miracles From Heaven” trailer, I ran to my computer to watch it. I was so excited to see how Hollywood was going to represent rare diseases. It was like a dream come true! Two of my worlds were finally coming together!

The trailer hit me hard. It brought me right back to my summer of 2013 with my oldest, Ava. The scene of Jennifer running up the stairs to her screaming daughter, I’ve been there as well. It brought me to my knees. All I could think about was Ava’s screams.

The scene of Jennifer refusing to leave the emergency room, I have been there too. I cried watching the scenes. It was beautifully acted and represented exactly what it is like to live with a child suffering from a rare disease.

When the moment came in the trailer that you find out Annabel’s rare disease was cured by a miracle, I cried even harder. This was our moment to show how hard it is to live in the world of the unknown, rare and undiagnosed diseases. This was our moment for healthy families to see what we suffer through on a daily basis.

Nope. Rare diseases are cured by miracles from Heaven.

Although the message of the movie is extremely powerful and important, it is not what happens for the majority of rare disease families at this time.

I have read the quote from Ms. Christy Beam and I respect her experience and their journey. “It’s a message of hope and inspiration, and they are feeling encouraged. The message of the film is there are miracles around you daily; all you have to do is look up. In your time of trial, in your time of challenge, look up. Be that miracle for someone else.”

We can only pray for Hollywood and the media to understand that the reality for the majority of families living with a rare or undiagnosed disease will not have a miracle save them. In fact, 30% of children with a rare disease will not live to see their 5^th birthday.  For the 30 million Americans, 350 million people worldwide, 95% of rare diseases do not have a single FDA approved drug treatment and there are no cures. 1 in 10 people suffer from a rare disease. Rare diseases affect more people than AIDs and Cancer COMBINED.

We would love for you, Hollywood, and the media, to take this opportunity to focus on the majority of rare disease families and not just the one family saved by a miracle from Heaven.

For example, Charlee Nelson, of Charlee’s Angels, lost her life at age six years old to Batten disease. Her parents, Catrina and Jeff, did find peace while watching “Miracles From Heaven” and that is very important. Charlee is in Heaven and is a Rare Angel.

I encourage you to visit our websites at www.utahrare.org  and at www.rareundiagnosed.org to learn more about the majority of families living in a diagnostic odyssey and the world of the unknown. *All photographs are either from Season Atwater, Aware of Angels, or directly from the  families.

Ava Szajnuk (8 yrs old), Undiagnosed Genetic Dysfunction

Harlie Valdez (14 yrs old), Juvenile Dermamyositis (JDM)

Hailey Sampsel (15 yrs old), Undiagnosed Migraines

Rachel Nielsen (16 yrs old), Eosinophilic Esophagitis/Colitis

Preston Zundel (14 yrs old), Eosinophilic Colitis

Aliyah Peedle (14 yrs old), Vacterl Association

Ricki Jenson (17 yrs old), Neurofibromatosis type II (NF2)

Katie Nuffer (18 yrs old), Multiple Hereditary Exostoses (MHE)

Calen Forsythe (15 yrs old), Undiagnosed

Katie Maguire (15 yrs old), Mastocytosis/Urticaria Pigmentosa

Michael Lee (13 yrs old), Undiagnosed

Jaderee Eakle (17yrs old), Eosinophilic Colitis

Michael George (13 yrs old), Undiagnosed

Oskar Szajnuk (6 yrs old), Undiagnosed Genetic Dysfunction

Lucy Szajnuk (4 yrs old), Undiagnosed Genetic Dysfunction

Each one of these families has an incredible story to share about their faith, their pain and their perseverance. I can only pray that Hollywood and the media take the time to be responsible by following up on the reality of living with a rare or undiagnosed disease. There are literally millions of stories to share.

On your official “Miracles from Heaven” website, you asked for people to Share Their Miracles From Heaven. Why didn’t you ask for people to share about their journey with a rare disease?

And, your official “Miracles from Heaven” website, your Partners page does not even have one rare disease partnership.

Why this is so important to me…

My fight to save my children has been a diagnostic odyssey over four states, seven hospitals and fifty specialists. I used to work in Hollywood for many different high-profile directors, producers and studio executives such as Wes Craven on “Scream 2“, Jerry Bruckheimer Films, and Miramax Films. My life path took me out of Hollywood and into motherhood only to find out that I had three children with an undiagnosed genetic dysfunction. Just like Annabel’s mom, I refused to leave the emergency room in June, 2013. My oldest, Ava, would have died over the weekend due to a subdural hygroma. She had four cranial surgeries, is now shunt-dependent and suffers from an undiagnosed genetic dysfunction. My two younger children also suffer from an undiagnosed genetic dysfunction and scream in pain daily. Ava is a miracle child but still fights daily with her undiagnosed genetic dysfunction. Her shunt could fail at any moment and she could die. We pray for miracles every single day.

Our diagnostic odyssey has come out of the walls of the hospitals and into the world of genetics through whole exome sequencing and whole genome sequencing. When the human genome was discovered it was a sign from Heaven.

I recently read a book referred to me by, Dr. John Carey. The Language of God by Francis S. Collins. I was intrigued in the very beginning. In the introduction, it is written…

“It is a happy day for the world. It is humbling for me, and awe-inspiring, to realize that we have caught the first glimpse of our own instruction book, previously known only to God.” – Francis S. Collins, The Language of God. He was referring to the human genome.

If there is a miracle for a rare disease family, it will most likely come from science. 

Ethan Bruns (11 years old) Atypical HUS is a perfect example of the kind of miracle we need to pray for. The drug Solaris saved his life. Science saved Ethan and it is a miracle.

As I was putting Ava to bed last night, we discussed this letter and then said our nightly prayer.  As I was walking out of the room, she said, “Mom. The movie is really good and very important about faith and Heaven. They just forgot the science part.”

We pray for our miracle through science. We pray for Answers.

I worked in the entertainment industry, corporate American and the professional sports industry. We waited to have children until we were prepared to care for them and support them. Nothing prepared us for having three children with an undiagnosed genetic dysfunction. Nothing. It is emotionally, physically and financially exhausting.

We tried to raise awareness this past February for Rare Disease Day. We had 29 rare children, 1 rare Angel sibling and 8 rare Angel photographs on the court for the National Anthem of the NBA Utah Jazz for Rare Disease Day awareness along with 5 other NBA teams raising awareness for Rare Disease Day. There was barely any media coverage.

“Miracles from Heaven” came out and the media loves the story line. Now they love rare diseases.

“Miracles from Heaven” brought in $1.9 million opening weekend. Do you have any idea how much $1.9 million could do for our rare community?

Miracles. 

 

 

 

 

 

 

 

 

Sincerely,

Gina Szajnuk