Embassy Suites Irvine Donates Complimentary Three Night Stay, $500.00 Donation Check
Thomas Walkup was born March 9, 2007 to parents Susan (Walkup) Banks of Millville and Dave Cardana of Vineland, NJ. At 4 weeks old, Susan was told by doctors her newborn was going to endure some vision obstacles. Without hesitation, Susan took Thomas to Children's Hospital of Pennsylvania (CHOP) when she was faced with a parent's worst nightmare. Doctors informed Susan that Thomas was blind. Thomas was diagnosed with congenital nystagmus. Congentital nystagmus (1 out of 5,000 people) is present at birth. With this condition, your eyes move together as they oscillate (swing like a pendulum)" shaky eye syndrome". Most other types of infantile nystagmus are also classified as forms of strabismus, which means the eyes don't necessarily work together at all times. The doctors told her there wasn't anything they could do to help him. At 8 months old, Susan noticed a change. Thomas began tracking movement with his eyes. After a few follow-up visits, Susan was told Thomas seemed to be gaining some vision, but they could not give any definitive answers of what his vision would be in the future, whether it could get better or become worse for that matter.
As Thomas grew older, his brain automatically began helping him compensate to slow his "shaky eyes" by tilting his head and looking out the side of his eyes. Doing this, Thomas has been wrongly accused, by people who did not know of his disability, of not paying attention or day dreaming. Although Thomas learned to control his shaky eyes, his vision is only 20/60. With his vision being 20/60, there are many things Thomas would not be able to do in the future. Such things that he has dreamed about and would not be possible are: obtaining a driver's license, becoming a fireman and joining the military. As most know, Thomas's uncle, who he was named after, United States Air Force SSgt. Thomas Walkup, Jr. died November 23, 2003 in Afghanistan. Thomas has always heard what a hero his uncle was for serving our country and Thomas wishes to be just like him.
By age 6, Thomas had done his very best to be "just like the other kids" and his sisters, Alyssa Justis and Kassidy Banks and brothers, Caden and JT Banks, III. Thomas shares a love sports with his stepdad, JT Banks, Jr., so Susan signed him up for baseball and football. He did fantastic, in spite, of his disability. But in February 2014, Susan was faced with another nightmare concerning Thomas's health. Thomas was diagnosed with Langerhans Cell Histiocytosis (LCH). LCH (1 out of 200,000 people) is too many Langerhans cells are produced and build up in certain parts of the body where they can form tumors or damage organs. Thomas developed a lesion in his head. Again, at CHOP, Thomas underwent surgery to remove the lesion from his skull and a plate was inserted. The day Susan brought Thomas home from CHOP she knew something was not "quite right" with Thomas. Susan rushed Thomas to Inspira Hospital in Vineland, NJ where his heart rate was over 200. CHOP sent an ambulance with a cardiac team to transport Thomas to CHOP with the cardiac team evaluating him every step of the way. Upon his arrival at CHOP, he was admitted directly in ICU. It was there, CHOP diagnosed Thomas with supraventricular tachycardia (SVT). SVT is a cardiac arrhythmia arising from improper electrical activity of the heart. CHOP wanted to operate to fix the problem quickly but could not due to some complications Thomas had suffered from the LCH. So, for a short time, doctors treated Thomas with medication until he was well enough to undergo heart surgery, which he did in May of 2014. Obviously, sports was out of the question for a while. Thomas had to endure PET scans, MRIs, skeletal surveys and several other test every 3 months. At present, all is well with the LCH.
Thomas has learned to live life with his impairments. He is not only an inspiration to other kids, but to adults as well, myself included. Thomas, who is now 8 years old, is beginning to have some struggles due to his congenital nystagmus (shaky eyes). School is getting to be a little more difficult. Not being able to see the board as well, even if he sits in the front of the class. Kids are starting to tease him about his "wiggly eyes" and glasses. And in order to participate in any sports, he must wear an "unique" helmet because of the LCH.
Susan is Thomas's BIGGEST advocate, as any parent should be for their child. Susan has reached out to the Commission of the Blind and State Department of Education for guidance and assistance and has had negative results. Through Susan's recent research, she found Dr. Lingua at Gavin Herbert Eye Institute in Irvine, CA. He is the only doctor to operate on children with congenital nystagmus and vision correction with 100% positive results. Susan contacted the facility and they requested his medical records and a video of this eyes. Susan provided Dr. Lingua with everything he needed in 2 days and Dr. Lingua has accepted Thomas and will be performing surgery in late August of this year. Even though Thomas's surgery will be covered by insurance, there will be numerous "out of pocket" expenses, such as, air fare, hotel stay, meals, rental car, just to name a few. They will have to be in California for at least 15 days while traveling back and forth (as an outpatient) while the doctors evaluate Thomas's progress. Susan knows "out of pocket" expenses are going to be extremely expensive BUT her son, Thomas, seeing normal ... PRICELESS.
Thomas has always been positive and a "true warrior". Susan wants her son to be accepted and known for the awesome little boy with the kindest heart, not for his disabilities.
We ALL have the ability to HELP THOMAS SEE HIS FUTURE. Thank you in advance for your support and graciousness.
Amanda Gould | Business Travel Manager | Embassy Suites Irvine