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August 14, 2014

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August 14, 2014

I am a 49 year old female who was diagnosed on 02/04/14 with Stage 4 of a very rare type of cancer. I was blind-sighted, never saw it coming. The oncologist I saw at the University of TN Cancer Center (who I'd heard wonderful things about) gave me ONE option of chemo, which had horrible side effects & a very bleak chance of being helpful at all. He wouldn't even suggest whether I should take the chemo or not. He looked me straight in they eyes and just said "This cancer is going to take your life; it's just a matter of when."

My mom (who I tried to talk out of it, but had insisted on going to the appointment with me, after the PET scans, CT scans, biopsies had all been done) and I were first shocked and sat for a moment in silence, grasping each others' hands. Then we hugged each other and cried for a few minutes. Then I gathered myself for a moment and asked the only question that came to my mind: "How in the world am I going to tell my teenage daughter?" (a daughter who tells all of her friends that I am her very best friend, a daughter who shares everything with me (how blessed I am!), a daughter with a strong relationship with our Savior and a spiritual outlook and maturity that at times just amazes me, a daughter who's an honor student and already has taken several college credit classes while in high school, a daughter I could not have even known how to pray for, but with whom I am crazy in love with and for whom I would do anything in the world). The very thought of telling her what the oncologist told me literally broke my heart. I felt an ache I've never known. The oncologist had not much of a response that I can recall.

My mom then asked: "Aren't there any options?! This just can't be it!" The oncologist mentioned we might try MD Anderson in Houston, TX, that perhaps there were clinical trials that I might be eligible for. After the appointment, driving home - I cried, then screamed, then sat in silence; and then about halfway home, I pulled over into an empty church parking lot, googled MD Anderson on my iPhone, called them and made my first appointment.

After about 7 weeks at MD Anderson (and many tests, scans, bloodwork), I was indeed accepted into a clinical trial that had proven very effective in breast cancer and melanoma patients. This clinical trial chemotherapy had to be administered at MD Anderson every 2 weeks for 2 years. There was no question, I had to somehow find a way to take part in that clinical trial. (Though I'm perfectly ready to meet my Savior and bow at His feet and praise Him, I am NOT ready to leave my daughter, as I'm the only parent mentally, emotionally, spiritually & physically in-sync and available to her, as her dad has always been a 'checked out' kind of man).

But how??? How in the world would I get to Houston, TX from Knoxville, TN EVERY TWO WEEKS for TWO YEARS. I am not rich & there was nothing at my disposal that would generate the kind of cash it would require for that many flights. I contacted the American Cancer Society and they gave me information on Miracle Flights.

From my very first conversation with Ginny at Miracle Flights (who is very pleasant, compassionate, personable, yet still professional), I knew I was on the right track. She walked me through everything I needed to do to apply for flight assistance; and she very patiently answered every single question I had, even when I called her back many times.

Then, speaking to Mary, who scheduled my flights - I was just amazed that she didn't just stick me on a flight, call me, and say 'that's that'. She actually calls me before scheduling my flights and gives me the options she can find, and works with me to pick the flights that are best for me. She too, is very compassionate and personable, yet professional - a rare breed, both Ginny and Mary.

Without Miracle Flights, I would never have been able to take part in the clinical trial chemotherapy in Houston, TX, as I could never have afforded the flights. And the chances of continuing to live my life would've been, as my local oncologist originally said 'just a matter of time'. I thank God for Miracle Flights, as I see them as a true miracle that God is using (even as I write this) to work toward my healing.

Ways to make it better...

If I had to make changes to this organization, I would...

...not change a single thing. To be in the position of having to ask for help is humbling (almost embarrassing); not one time ever has anyone at Miracle Flights ever treated me with anything but respect and the utmost dignity.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

August 14, 2014

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August 14, 2014

Our daughter was born with a droopy eye lid that we later found out was much more involved. She has a rare eye condition in her left eye. At an appointment in March of 2014 we found out her retina in her left eye had detached. She had one procedure that was unsuccessful in reattaching her retina and it was recommended we fly her to Michigan for a second procedure. Miracle Flights helped us to fly her to Michigan 2 times. We hope things work out so that she can still have vision in her left eye. We are grateful for the caring staff that have kindly arranged flights for us and made it possible for us to fly her for her surgeries.

Ways to make it better...

If I had to make changes to this organization, I would...

They required us to give the financial information of family who helped us while my husband was a student in order to get help from Miracle Flights. I felt like our financial information should have been enough (even though it wasn't much). I was grateful that they were able to arrange a flight closer to us the second time they flew us. Thanks again!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

August 13, 2014

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August 13, 2014

Our son Liam was born December 20th, 2011 and was diagnosed with a very rare disorder called Moebius Syndrome shorty there after. We have met very few families that have been affected by this syndrome so when we heard there was a Moebius Conference we HAD to go! The conference was held in Washington DC where we met hundreds of people with Moebius and also had the opportunity to meet with some of the best doctors, surgeons, therapists, and specialists across the world! Without Miracle Flights we wouldn't have been able to afford this trip. So THANK YOU, THANK YOU, THANK YOU for your amazing organization and the invaluable opportunity you allowed us to have!

Ways to make it better...

If I had to make changes to this organization, I would...

Make more people aware of this incredible organization!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

August 13, 2014

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August 13, 2014

Dominic was born on August 28, 2013, shortly after his fraternal twin brother, Vincent. After 6 excruciatingly long weeks, we discovered Dominic was born with a 1 in a million life threatening intestinal disease. His intestines lack nerves and the ability to absorb enough nutrients to sustain life. He needs TPN and lipids (IV nutrition and fats). The lipids, a soybean oil emulsion, were destroying his liver. We were quickly finding ourselves on the path towards small bowel and liver transplant; a procedure with only a 50% survival rate, made even more risky because Dominic is only 14 pounds at 11 months old.

Dr. Mark Puder, at Boston Children's Hospital, has helped pioneer a new lipid, Omegaven, which is made from fish oil. This new lipid is being used to correct TPN- related cholestasis with great success! It is providing an opportunity, for children and babies like Dominic, to grow and become healthier! Possibly avoiding transplant altogether! Omegaven is not FDA approved, and not widely available. We had to find a way to get Dominic to Boston from Michigan, but financially it was far out of reach.

Then we found Miracle Flights! It was our ticket to the life-saving treatment Dominic so desperately needed! Friends and family rallied to our side to help fund our lengthy stay in Boston.

Dominic's liver has drastically improved in the last 4 weeks since starting treatment. We will be returning home in another week, with a healthy baby! Dominic will continue receiving treatment through BCH, returning every 6-8 weeks or more frequently, as needed. Because of Miracle Flights, Dominic can continue receiving care through one of the best Intestinal Rehabilitation Programs in the country and stay on Omegaven.

We are truly grateful! Dominic has the chance to grow and thrive. We have been so scared that we could lose him. Miracle Flights has given us the ability to focus on living, the chance to see Dominic grow up and reach milestones. Truly, from the bottom of our hearts, we are thankful!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

July 27, 2014

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July 27, 2014

This charity has helped my son get to and from medical appointments as well as a surgery he needed. I do not know where I would be without miracle flights. Their customer service is outstanding.

Ways to make it better...

If I had to make changes to this organization, I would...

The only frustrating things is getting my doctor to complete the forms correctly. Maybe they can come up with a specific checklist for the letter or sample letter for the pediatricain to fill out.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

July 25, 2014

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July 25, 2014

I was diagnosed with Carcinoid Cancer stage 4. My doctor could not find the primary source he in Phoenix. I found a specialist in Nashville that specialized in this rare cancer. When my husband and I met with Dr. Liu, not only did he find my primary cancer but he reported that my cancer was an aggressive type and I needed chemo right away. I went 41 days of not being treated properly. If it was not for Miracle Flights, I would still be searching for the primary tumor and being treated for a less aggressive type of Carcinoid. Thank you Miracle Flights for saving my life!!!!!!!

Ways to make it better...

If I had to make changes to this organization, I would...

Do nothing.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

July 7, 2014

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July 7, 2014

My son has a neurogenic bowel and it was suggested to us five years ago that we should take him to Boston Children's Hospital for a better alternative on how to treat it however we were not able to do that until I found Miracle Flights for Kids. Since that time Colton has had the necessary testing, diagnosis confirmation and a life changing appendicostomy surgery to help us manage his condition. He is doing great with with his appendicostomy flushes which is giving him a much better quality of life. Colton is a very smart kid and has an interest in medicine, hopefully he will care for others and give back someday. Thank you so much for being there and helping us more than you can ever know!

Denise

Ways to make it better...

If I had to make changes to this organization, I would...

Donate when I can afford to someday

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

July 7, 2014

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July 7, 2014

you would never think that your life can change in a blink of an eye. My husband and I were on our way to see the doctor for an ultrasound. there we found out our precious little Emelee was sick. Quickly doctors decide to hospitals me and try to do there best to get ready for this little angle to come. after two months the doctors advice us that it was time. My self very scare because she was only 32 weeks. but doctors advised they can do more with her here then in my belly. So my little angle was born May 24 2010. And her battle to live began, within minutes of her life Emelee had her first surgery. She was in the UNIC unit for 3 months. Once release from hospital we became a (frequent flier) an nickname they give families that are in and out of the hospital allot. There was a point that we were admitted every 2 weeks to the hospital it became our second home. Rocky Mountain Hospital for children were the best they took care for her like she was there own. 3 years later, after multiple surgeries her team of specialist had exhausted all the available interventions they could here in Colorado. So her lead surgeon recommended that we go to Cincinnati Children Hospital in Ohio. On March 2013 we took out first Miracle Flight to Cincinnati OH. We meet with a group of doctors, after many test. we were told they can fix everything with one marathon operation. On Dec 10 2013 we did our second Miracle Flight, we were set and ready for the big surgey but we had a little hiccup Emelee got sick a couple of hours before the surgery, so they had to cancel her surgery. We came home and wait again see when Emelee could have her next surgery. That day has come, we are set to have her surgery June 5 2014. Miracle Flights have done so much for us, we would never have been able to afford this trips and the more to come on our own. With so many medical bills and time off from work I don't know where we would get the money, With Miracle Flight help I was able to worry about Emelee. Paper work is easy to fill out and there a phone call away if need to call.. thank you for everything you do there not enough words to say thank you and work you do.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

July 3, 2014

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July 3, 2014

My child has a very rare genetic disease that was discovered in 1999 by dr. Katz at NIH in bethesda,MD. Unfortunately there is no one anywhere near us that is familiar so twice a year we take the trip to NIH in order for our child can be seen. Her episodes are intense. Because of miracle flight we are able to go to
NIH so she can be apart of the study's miracle flights has been such a blessing to our family. I really don't know what we would do. The staff is loving and caring and super supportive especially Ginny. It is a non prophet organization that truly does help sick children and their families. Thank you doesn't even seem enough. The Miranda family. We live in California and NIH is in Bethesda MD. We could never afford these trips on our own. Thank you Miracle Flight

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

July 3, 2014

more

July 3, 2014

We utilized Miracle Flights for Kids to travel from California to Pennsylvania. Our youngest daughter was born with Arthrogryposis. The treament plan prescribed by local doctors was to wait and see how she grows, with the silver lining being she may be in a wheelchair for life. While that is still a possibility, the doctors in Pennsylvania have given us much more hope for her future. Their treatment plan has included serial casting, bracing, and recently surgery. All of which has put her on the right path to one day walk. Without Miracle Flights, we would not be able to see the doctors across country, and our daughter wouldn't have the care she deservse. We are so grateful for Mircle Flights and all the donors! It's been such a blessing to have ease of mind that our daughter can get the best care available for her without having to worry about how we are going to get it for her. Thank you Miracle Flights for all you do!!!

Ways to make it better...

If I had to make changes to this organization, I would...

I cannot think of one way to change, except maybe have them expand. :)

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

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