Why are we asking for $20?

Shiya, Nora & Ayrie

27 months ago I sat in a small windowless office with an ENT who seemed brusque and efficient as she told me that my 1 year old son had recurrent respiratory papillomatosis (RRP).  She told me that RRP is an infection of HPV strains 6 or 11 in the respiratory tissue that causes benign tumors to grow rapidly and aggressively.  There was no cure and repeated surgeries would be needed because without surgery the tumors would block his airway, suffocating him.  She then told me that he needed to have surgery in the next two weeks to keep his airway open.

I numbly walked to the front desk to schedule surgery where I was asked for an $800 down payment.  I started to cry so hard that I had to leave without scheduling the surgery.  I don’t even remember driving home that afternoon.  In retrospect I should have called someone for a ride.  I arrived at my sister’s apartment where she and her husband were watching Shiya, Ayrie’s then 2 month old brother.  I handed Ayrie to her and I couldn’t even tell her what was wrong.  I had to leave.  I had to be alone.  I was terrified, scared, angry, isolated and ashamed.

This was not the last time I felt terrified, scared, angry, isolated and ashamed.  In the last two years I have had some of my darkest times.  I was not only worried that my child would die, but that my child would die a slow and painful death caused by tumors turning malignant and spreading to his lungs.  I wondered how Shiya and I would survive alone, without Ayrie.   There were times when the tumors were growing so quickly that he needed monthly operations to keep him alive.  In the last 27 months he has had 20 surgeries.

The bad?

• ayrie hasn’t been able to talk above a whisper for more than half of the last 27 months
• i have no idea what the long-term effects are of frequent general anesthesia
• doctors have criticized my parenting and decision making
• insurance has been hard to get, and hard to keep
• i had to quit my job and make less than 1/3 of what I used to
• shiya has to stay with my sister and her husband and times that must seem random and unpredictable to him
• We now travel 1,200 miles for every surgery at a high financial and physical cost

The good?

• It has brought my family and friends closer together
• My sister and her husband bought a duplex in Minneapolis that we can all live in and share the burdens & joy (read more here)
• Ayrie and Shiya are empathetic beyond their years
• Ayrie’s doctor and MEEI have made me believe in miracles and heros
• We are a closer, more flexible and more resilient family
• I have realized that each of us matters, that there are people who care about each of us
• I am starting a non-profit (www.tombolo.mn) and will hopefully be able to give back to others what I have received

The really good?

• Ayrie is trying a safe & experimental treatment under Dr. Hartnick’s care and was able to go 13 weeks without a surgery!!!
• His last surgery showed improvement, with fewer tumors than ever before.
• This is the first good news about Ayrie’s condition that we’ve had in the last 27 months.

Ayrie is not out of the woods.  This is a lifelong condition with no cure.  But traveling to Boston has allowed us to make tremendous strides in improving the quality of his and our lives.   The slideshow below shows you what a typical trip to ‘the Boston hospital’ is like for Ayrie.

Ayrie’s 20th Surgery

We need your help because I simply cannot pay for Ayrie’s medical costs.  Nor can we afford to move to Boston.   But even more importantly, we cannot afford to see any other surgeon.  We have found the best and will do everything we can to stay in his care.

400 donations of $20 would ensure that Ayrie can travel to Boston for at least one more year.

Thank you for reading our story!!

xo

nora, ayrie & shiya

Click here to donate directly to Ayrie’s Travel Fund.

-Nora

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