Lifesaving medicine for Sammy- #vidaparaSammy

 

 

 

This is Sammy. She has a smile that lights up your heart and a spirit that is unforgettable. Sammy was born with a rare disease called Hereditary Angioedema. Together, we can change her life.

 

Life-saving medicine for Samantha Madrigal

 

Sammy is a sunny 10-year-old from Costa Rica who experiences severe pain and swelling all over her body due to this rare blood disorder known as HAE.

She is repeatedly and relentlessly disfigured by the disease and faces life-threatening swelling.  The swelling happens as often as weekly; it's unpredictable, and at a pain level that is described in medical literature as "debilitating". . .
the real killer however is that medicine exists to treat this disease, but it's not available in Costa Rica. . . yet. 

Your donation and sharing of Sammy's story can help change that.

Medicine exists outside of Costa Rica that can prevent these attacks from happening, it can also make a normal life possible for Sammy: a life without pain and fear of dying, a life where going to school consistently is possible.

This is a story about a little girl in Costa Rica but it is also about access to life-saving treatments for rare diseases, for treatment often depends on where you live. Imagine knowing your child's life was at risk, medicine existed but you don't have access. At heart, this is a story about health as a human right.

 

 

 

 

My name is Lisa Layera, and my husband and three children have Hereditary Angioedema, I lived that feeling before we gained access to treatment. Modern medicines have transformed our lives. Our family went from living through code blues, ICU stays, and months of missed school and feeling like the bottom had dropped out of our lives to everyone being safe and living flourishing lives.

I am organizing this campaign on behalf of Sammy because I want to pay it forward to this special and brave little girl: I am so grateful for the medical care and treatment my own children have had and the kindness we have been shown since the day we received the diagnosis.

 

Thanks to the work of committed scientists, modern medicine exists that can prevent attacks from happening. To see the medicine work is like watching a miracle unfold.

 

A year ago Sammy’s tongue swelled so massively doctors feared she may not survive the attack. The goal of this campaign is to buy medicine available outside of Costa Rica that can prevent these painful, frightening, and potentially deadly attacks from occurring.  Your donation has the power to change Sammy's life.

This is a medicine that can give Sammy her life back. Each dose costs $2400 USD,  $60,000 provides Sammy with a launch of the medicine until treatment with a first-line medicine can be organized in Costa Rica. 

 

What will your donation do?

 

 

We don’t want to lose Sammy: treatment exists.

 

 

 

I have worked closely with Sammy’s mother over the last year trying to help bring HAE medicine to Costa Rica where I used to live and where our daughter was diagnosed. Sammy’s mom is now president of the patient association I helped co-found; last year we lost a patient to asphyxiation who helped champion forming the association. No one wants to lose Sammy this way.

 

 

 

 

 

What will Sammy face without our help?

 

Severe swelling of tissues in her face, limbs, hands, feet, lining of her gut and if it occurs in her airway, it can lead to asphyxiation. The swelling could happen if she gets bumped, catches a cold, gets her period, or for no reason at all. Attacks can happen to Sammy as often as every three days.

 

A month ago, Sammy’s arm and hand swelled so much she was at risk of developing compartment syndrome, an event that at its worst, can lead to amputation.

 

 

 

 

Her feet often swell so much she cannot walk. If the swelling occurs in her abdomen, she can vomit relentlessly and the pain is extreme, so much so that a ⅓ of HAE patients have lost organs unnecessarily due to emergency surgeries. Not long ago, Sammy’s appendix was nearly removed because her presentation was so severe, but it was yet another episode of the HAE. The same thing happened to our daughter. HAE patients' abdomens swell so much they can look like they are six months pregnant, the pain, I’m told, is extraordinary.

 

 

 

An immediate solution is available.

 

There are no words to describe the burden of disease for this family, Sammy swells frequently, severely, and has a history of close calls. Time is of the essence. Sammy is entering puberty which can trigger a dangerous chapter of the disease if she does not have access to modern medicine. She is also scheduled for oral surgery, a procedure that for HAE patients can be deadly if swelling is not controlled with first-line treatment available to keep them from asphyxiating.

 

 $60,000 will get Sammy to the HAE expert and start her treatment

Her physician in Costa Rica has arranged for permission to bring back the medicine and will manage her back home.

 

Good health is possible for Sammy

 

 

 

 

HAE is described medically as debilitating in part because episodes can occur so frequently, one after another, month after month, year after year. For Sammy, it often means she is ill for much of each month, our own daughter missed most of the 7th grade. It takes Sammy’s body days to recover so she lives life between swelling episodes, in recovery, at the hospital or, in pain.

Silver bullets don’t often exist, especially when it comes to really sick children but in this case, a solution is possible.

 

 

 

 

 

 

What is at stake?

During an attack Sammy can lose the ability to walk, function, eat, and in the worst-case scenario- Sammy could lose the ability to breathe. When she was four years old she was placed on a respirator; not yet diagnosed, her breathing and swallowing difficulty was attributed to the croup. HAE has been described as excruciating by adults and medical researchers, but for a child to endure this week after week, month after month all the while knowing she can asphyxiate is truly heavy. Can you help put an end to the pain Sammy has endured for years and ensure that her life is no longer at risk? We are working hard to seek a permanent solution in Costa Rica, not only for Sammy but for other children like her.

 

“We can significantly improve this child's life and I hope, as humans, we can achieve this.”

- Dr. Timothy Craig, HAE expert from Penn State who has treated 100’s of children diagnosed with HAE

 

 

 

 

Help has been offered

An HAE expert outside of Costa Rica has offered to examine Sammy and begin her treatment.

The intention of this campaign is to offset costs of transportation, lodging, and most importantly, to purchase life-saving medicine. 

Any contribution is greatly appreciated and will go directly to supporting Sammy. All help is gratefully received.

 

How Can you Help?

 

1. GIVE whatever you can, all donations are gratefully received.

2. SHARE on social media. #vidaparasammy

3. EMAIL this page to your family + friends + community

https://www.gofundme.com/f/lifesaving-medicine-for-sammy 

Together We Can Make a Difference

Please help support Sammy.

 

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UPDATE:
Sammy has been in the hospital twice just in the first two weeks of November, oxygen was necessary the last time and she was so sick both times to the extent that her mother was asked to leave the room as the crisis was managed.  Her mother was fired from her job the week of one of the hospital visits- it is the second time in a year Sammy's mom has lost her job following hospitalizations.

Each time Sammy has to go to the hospital I don't think it can be as devastating as the last time but it manages to be.

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DONATION UPDATE:

PAUL CHAPLET, the second-youngest player to ever tee up at the Master's and Costa Rican golfer with heart is helping spread the word #vidaparasammy in the sports world. We are so grateful for his generosity.

CLUB SPORT HEREDIANO, "EL TEAM"- the beloved national futbol club (in Ted Lasso talk one of only 2 national teams to never be relegated!) got involved and showed their support of Sammy. Here are some photos of Sammy with the club. 

Please visit the page for updates and share this effort as widely as you can. 

Thank you so much.