Help Superheros Eleanor and Benjamin Fight Cancer & Chiari

For: Eleanor and Benjamin Seigel
Organizer: Regina & Douglas McPherson (Oma & Opa)
Help Superheros Eleanor and Benjamin Fight Cancer & Chiari (Eleanor and Benjamin Seigel)
of $15,000 goal
47% Complete
Raised by 62 donors

The Story

Andrew and Nicole have two very beautiful children to whom they give all of themselves, to raise beautiful well-loved and happy children. Although they face every parents' worst nightmares in medical diagnoses, they face it with great strength and perseverance. Eleanor was diagnosed with High-Risk Infant Acute Lymphoblastic Leukemia. Ella only has a 40 - 60% survival rate of five years. But she is fighting with all of her might. Benjamin has been diagnosed with an Arnold-Chiari Malformation (for which he has already had two brain decompression surgeries), Syringomyelia, Ehlers-Danlos Syndrome and severe asthma. Benjamin has a team of ten different doctors that he meets with regularly, along with regular MRI's, blood work, and other tests as needed. His doctors are trying to control his many different symptoms (seizures, pain, numbness and tingling in his limbs, sleep apnea, choking, fatigue, migraines, neck pain, severe gastrointestinal problems) and continue to look for explanations for the symptoms and pain he goes through. Both kids receive weekly occupational therapy and physical therapy. Needless to say, Mom and Dad have no time for themselves, making it impossible for Nicole to work more than 3 – 10 hours a week. But she does, every little bit to help.

The family is struggling financially and they desperately need your help. One year down, one year to go with Ella's cancer treatments and they are currently struggling with over $10,000 in medical bills, countless pharmacy and medical supply bills and high credit card payments for gas and tolls as they continue to travel back and forth to Buffalo for both Ella and Benjamin, and to Rochester, NY for Benjamin. On top of this, they now have no choice but to neglect their home (their roof is leaking in the sunroom and garage and they are hoping that it does not spread to the rest of the home any time soon), leaking plumbing for both bathrooms. Andrew's car is on its last leg (many many rescues by Douglas, Opa) and Nicole's car is taking quite a wear as well.

Their compassion and kindness have touched many peoples lives. Now it is time for Andrew and Nicole's friends and family to help support them. So how can you help? If you can contribute to their fundraiser please do so. All funds raised will help to pay off some of the medical debt they are facing. If not, a letter of support, phone calls, a warm meal, a week of groceries, even a gas card will help ease their daily struggles as they try to heal their children. They would also appreciate any caring thougts and prayers you can send their way. Thank you from the bottom of our hearts.

Please use this website to check in on how they are doing with Ella's and Benjamin's treatments.  Visit this site often, write in their guestbook, and send encouraging thoughts to them.

Prayer for a Sick Child

Bless this sick child who struggles,
radiant healing energy is needed now,
amplify this child's courage & immunity
bless this child's family with hope.

Bless this sick child who struggles,
each day this child can grow stronger.
May healing move within, banishing illness,
as radiant energy renews the life force.

Bless this sick child who struggles,
health begins to return, even before it can be seen,
May this child grow steadily stronger, Bless this child.

Fundraiser Updates

Posted on December 1, 2015

Posted on December 1, 2015

Often, the family will talk about Ella's cancer. It's side-effects. The fear of relapse. Nicole is going through great lengths to continually raise money - the research on infant leukemia is sparse and badly needed. Ella's chemos were often at adult dosages. To save her life, they will spend the rest of her life watching and protecting her little body, her little heart.

But they often struggle with Benjamin's health as well. Little is know about his diseases, and just now, new research is getting underway. Came across this information today, and thought I would share about one of his diseases, Ehlers-Danlos: Chronic pain. Chronic fatigue. Gastrointestinal disorders. Chronic headache disorders. Pelvic dysfunction. Cardiovascular problems. Dysfunction of the body’s automatic processes. Immune system regulation difficulties. Glandular problems. And of course, joint and spine troubles. Ehlers-Danlos syndromes are connective tissue disorders that can affect the entire body: connecting issues through connective tissues. There is no cure. -]

Constant family adjustments and lots of hard work. These kids are really loved. The wish is that they grow-up healthy, strong and loved.

Thank you for your continued support and love for the family.

Posted on November 17, 2015

Posted on November 17, 2015

Benjamin's health is stable at the moment. He is has gotten off to a really good start in 3rd grade. A few of his health concerns seem to be under control. His doctor is still working to control migraine headaches and seizures, he will be switching to a new medicine shortly. They are hoping for a smooth transition and good results. The family is extremely grateful that Ella continues to remain in remission. She has been chemo free now since September 2014. But things remain tough for our little fighter. She has not been feeling well now since September, including fatigue, several small and large seizures, rashes. Her battery of tests have included an MRI, additional blood work, a 2nd sleep deprived EEG and an upcoming hospital stay for a video EEG.  The family continues to do their very best for both kids. But, they continue to struggle with the the monthly medical bills (upwards of $500), gas, tolls and food. Every little bit helps this holiday season - and they are very grateful. Thank you - Happy Thanksgiving.

Posted on February 13, 2015

Posted on February 13, 2015

It has been a long road for the McSeigel family - a quick update as they continue on in their healing journey. Ella finished her chemo treatments in September! She is now being constantly being monitored with monthly blood draws, echos and scans of  her heart and check-ups. The family is hoping that she will be able to begin her immunizations again soon (she will need all of them from the very beginning). She is also being followed by a dermatologist with several skin issues on watch, a plastic surgeon who will eventually repair scar and scar tissues from the initial IV infiltration  and will see a physical medicine and rehabilitation doctor. Mom hopes to sign her up for some fun toddler dance classes and swim lessons to help with exercise and to help her gain strength. She is presenting with the same EDS characteristics as her brother and is also being followed by the same geneticist as her brother.

Benjamin has started to feel better, they have been able to manage a few more of his symptoms. He wears a CPAP machine to help him sleep and he has new medicines to help with his gastroparesis. It is still a constant struggle for the family though, as they continue to find answers to help him feel better.

The family still continues to struggle with large medical bills, co-pays, huge prescription bills, gas and tolls. House projects, including roof, windows and plumbing are still on hold. They are also looking for work for the summer to help compensate for not going back to work in Maine this summer.

Many blessings go out to you, for your continued support of this incredible family as they continue to fight cancer and chiari; and raise two incredible kids.

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