Photo Pages

Fund Photo Page
Fund Photo Page
Fund Photo Page
photos of Aubrie
pics to dr Waldman

• Tell a friend
• Create a page like this
• Please bookmark this page.

A Letter from Aubrie's Doctor

My name is Dr. Amy Waldman. I am a neurologist in Philadelphia and I specialize in Multiple Sclerosis. I want to explain more about this disease so that you can understand just how important you are to this fundraising campaign.

MS is a disease that typically affects young adults, usually between 20 and 40 years old, in the prime of their lives. MS affects the brain and spinal cord and causes many different symptoms. Some patients have blurry vision or double vision, or they can even lose their vision. Others have difficulty with their balance, numbness in an arm, or weakness in a leg. Many have overwhelming fatigue, and they are so tired they can’t get out of bed. For many patients with MS, these symptoms come and go, without any warning. It is a very unpredictable disease. It can worsen with time, and it is often debilitating. There is no cure for MS. There are a handful of first-line medications available to treat MS, but currently, they are all given by injection, a shot into the muscle or under the skin.

It is also difficult to understand, especially for a child. Take a minute and imagine telling a child about MS. Now picture yourself telling that child that he or she HAS MS.

Many people think that children don’t get MS. Most are surprised to learn that pediatric MS was recognized as early as 1922. Approximately 5% of all patients with MS are under the age of 16.

Let me tell you about one of my patients. At the age of 5, Aubrie had her first attack. She presented with lethargy, headache, vomiting, problems using her left side, and balance difficulty. She had extensive disease, and I was hopeful that this would be her only attack. Not all children go on to develop MS.

But, one month later, Aubrie’s symptoms returned. Two months after that, she had another attack. I approached her family about starting an injectable medication.

In the meantime, she came to see me just after Thanksgiving. She had not been doing well. She looked at me with those beautiful eyes and I desperately wanted to help her. But, there was very little we could do. I was also wondering how Aubrie was adjusting to all these trips to the hospital, getting blood work, etc. I worried about her and her disease.

And then I received this in the mail:

“I am thankful for my doctos and nurses at CHOP. Aubrie” (pic1)

I couldn’t hold back the tears.

Aubrie continued to worsen after Thanksgiving and spent the entire Christmas holiday in the hospital with perhaps her worst attack yet. Her vision and facial muscles were affected. She couldn’t walk or use her hands properly. And yet, she sent me this for the New Year:

“I want to be a good girl at school and be a good girl at CHOP. I will listen to what my doctor and nurses say.” Aubrie (pic2)

Diagnosed with MS, Aubrie needed to take daily shots to reduce the chance she would have another attack. Her parents were apprehensive about giving the injections themselves, so they brought her into my office.

I gave Aubrie her first shot on January 15, 2009.

I remember the day very clearly. I injected the medication into her left arm as she bravely watched. Tears welled up in her big blue eyes but she looked at me with gratitude.

Gratitude? I gave her a shot, and she gave me a smile.

A month later, I received this:(pic3)

For me, what is striking about these pictures is what you don’t see. You don’t see a hospital bed, a sick child, or the needles that she has to take. From looking at this picture, you have no idea that Aubrie has MS.

Because to her, MS is not about being sick. It is not about MRIs, spinal taps, steroids, IV’s, or disability. It is about staying healthy and being brave for those around her, including her doctor. It is about accepting what is happening to her body and drawing butterflies (a symbol of hope for her). She does not understand what MS is or what it means for her future.

We desperately need funding for pediatric MS research. None of the medications used to treat MS has been approved under the age of 18. We don’t know what Aubrie’s future will be like. Will she be able to pursue her dreams? Will she be able to chase her children? Will she even be able to walk?

Aubrie does not think about any of these things. Her innocence protects her from these fears. But imagine looking her mother in the eye and telling her that you don’t know if she will be in a wheelchair before her 30th birthday.

We need your help. Help us raise money for pediatric MS research. Think of Aubrie and her Butterflies of Hope. At the Children’s Hospital of Philadelphia, our motto is, “Hope lives here.” Help us keep Aubrie’s hope alive. With money for research, maybe by her 18th birthday, she can stop the injections and take a pill instead. Help us protect her innocence. Help us answer some of the unknowns that her parents worry about.

Aubrie and her family count on me and her team at CHOP. Can she count on you?