Hi. my name is Sophia. My Aunt Peggie set up this page for me in an effort to help me and my family through a very tough time. I am a normal 3 yr. old girl except that I have brain cancer. I try my best to be strong and to be a good girl even though things are tough for me right now. I have a dog named Lillie that is very silly. I love her very much and she loves me. Christmas is my favorite time of the year. I wish Christmas was everyday. I color alot, like books and I have very good manners. Everyone tells me that I am very intelligent (that is a big word isnt it?) I am known to say "thank you" to my nurses who give me "ouchies" sometimes. I have really great parents who love me very much. Sometimes they will do anything to make me laugh because they know that sometimes I am sad when I don't feel well. My Mommy has been known to crawl around on the hospital floor while my Daddy "pretends" to be looking for my Mommy. I think they call it Hide & Seek. Whatever it is called, it makes me laugh. I also have a brand new baby sister who was born at St. Joseph's hospital while I was at Eagelston. Her name is Fionna and she cries and poops alot. My Daddy is a really great musician and has played in my Aunt Peggie's band for a very long time. He has written songs about me because he loves me so much and thinks that I hung the moon. This past summer a big party was thrown for me (I think the adults said it was to help raise money for my treatments). They called it the Sophia's Hope Benefit Concert. I like the word HOPE. That is what I am hanging onto....HOPE. My Daddy was so happy that he was able to play and sing at my big party. Thank you everyone for helping out at my party and for all the nice things you have done for me and my family. I really want to get back soon to being "a little girl" doing what "little girls" do but I really do need your prayers and support. The doctors say that we are fighting a very tough battle. Lots of people are praying for me. I think my Aunt Peggie calls these people "Sophia Fans". If you want to visit my website you can go to www.sophiasjourney.org. If you want to be my friend, just make a friend request here on my page. Thank you all for being my friend. I also like any comments of encouragements that you leave. Now I better let my Aunt Peggie tell you a little more about what I am facing (in adult language). Bye bye everyone! Love, Sophia
Hello "Sophia Fans". Aunt Peggie here......First of all, let me just say, on behalf of the Langford family,...THANK YOU so much for your prayers and support of Sophia. Sophia is a beautiful little girl whom I love very much. Her Mommy & Daddy are family to me and they desperately need our support right now. I have built this site in an effort to gain more "Sophia Fans" who will pray diligently for her and help support her family. Please spread the word that this little girl NEEDS OUR PRAYERS. Her prognosis is poor and it will take a true miracle to cure her. I am trying to raise awareness, in the midst of our busy lives, that there are many families out there dealing with terminally ill children who need our support. You can not possibly grasp what these people go through in a day's time unless you are there with them or have experienced it yourself. We are all so grateful that Sophia is still here with us. This site is to honor Sophia's bravery and hopefully will inspire us all to appreciate every second that we have with our loved ones. Here is Sophia's story:
"The last thing Sophia’s family expected to be doing on a Sunday evening May 11, 2007 was to be sitting in the emergency room at Children’s Healthcare of Atlanta at Scottish Rite, staring at an x-ray of their two year old daughter’s skull. They were in one of the happiest periods of their lives, with a second child due the end of October. In the midst of their joy, one of the worst things imaginable entered their lives to test the strength of their family. Her parents could hardly breathe as they stared at the unthinkable – a tumor in their toddler’s cerebellum. Their lives changed forever that night.
In May, 2007, a neurologist removed the tumor from her brain and came back with the bad news that the tumor was malignant. Sophia’s diagnosis of anaplastic medulloblastoma, an aggressive rare brain tumor, required that she undergo a very aggressive course of chemotherapy. The last three rounds of her treatment would involve being admitted into a bone marrow transplant program, where she would get high doses of chemotherapy that would wipe out her immunity before rescuing her with her own stem cells. Since diagnosis, Sophia has spent most of each month in the hospital getting chemotherapy or getting treated for fevers and infections due to her low blood counts. She celebrated her third birthday in the hospital. This little girl has bravely suffered through the harshest of treatments. She had to adjust to a vascular port surgically put in her chest. She had a feeding tube surgically put in her belly for all of her nutritional and fluid needs. Her mother quit her job as an elementary school media specialist (librarian) so that she could be with Sophia at the hospital and so she could take care of Sophia’s medical needs the few times that they are home. Her daddy continues to juggle his commitment at work as middle school technology specialist and his desire and need to be with his family as much as possible.
On March 24, 2008, Sophia had to undergo yet another operation to remove a tumor that came back almost in the same location in her brain. This one was much larger and rested on her brain stem. She is once again facing numerous treatments in an effort to save her life. Sophia has had 5 operations within the past year.
The high cost of healthcare threatens Sophia’s future. The family has health insurance, but the out of pocket costs add up quickly and they are faced with a lifetime treatment cost cap which, once reached, will simply drop Sophia. Sophia has needed and may continue to need physical therapy to help gain strength back in her legs and torso. Sophia will need some speech therapy to work on her liquid swallowing skills after the chemo has been completed. If the current course of treatment fails to cure the cancer, then more treatments like radiation will be needed, some of which could be considered experimental and not covered by insurance. Chemotherapy also creates other medical problems, some that appear immediately and some that will develop years down the road. Hearing loss, kidney failure, dental problems, cognitive problems, and secondary cancers are all possible side effects. Sophia will require specialized medical attention the rest of her life.
In order to protect her future, a special needs trust has been created to help pay for her medical costs. No family can afford the medical bills for a seriously ill child. We are seeking help in building the trust fund to help relieve some of the stress from her family so they can focus on taking care of Sophia (and now baby Fionna has joined them). The money donated to the trust fund can not be used for anything but Sophia’s health needs and her quality of life needs related to her illness. Her parents cannot access the funds directly. The fund has an executor who will pay out funds directly to the vendors only along the guidelines above. The trust fund will be there for Sophia’s health needs the rest of her life, so she can focus on living her life as normally as possible without worrying about how to pay for all of her many health needs. Any help you could give would be greatly appreciated. No child deserves to suffer through a terrible illness like cancer, but your generosity could help one special little girl and her family in a time of great need."
If you are interested in helping this family by giving directly to Sophia's fund or have any questions, please contact:
Lynn Pasqualetti, ATA,ATP,CTP,EA
404-836-1120 ext. 116
Send checks:
HLM Finance Group
125 Clairmont Ave. Suite 150
Decatur, Ga. 30030
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