More recently Jazzy has had some difficult situations to deal with, including an absent father, her grandmother’s frequent sickness and a schoolmate’s tragic death. In May 2017, shortly after Jazzy turned 11, she started to complain of abdominal pain. At first the pain was treated with home care and local pediatrician visits. Jazzy’s mother Erika was reassured that this pain would go away as it was ‘normal’. As Jazzy’s symptoms progressively got more severe she was seen in the emergency department at least 10 times and had 3 separate hospital stays. Each time Erika was told there was "nothing wrong" since all tests came back clean and they couldn’t find the source of the issue. Due to these symptoms Jazzy lost her desire to eat which led to the placement of an NG tube to supplement feedings. She became unable to walk and began using a wheelchair. During Jazzy’s third hospital stay in July 2017 at Oakland's Children’s Hospital, she was finally given a diagnosis of "functional abdominal pain". Jazzy’s diagnosis is very vague and the belief is that she may be redirecting her emotions into her digestive system because they are too much to deal with and she does not have the words to explain her deepest feelings. Her strong character made her feel like she could not show emotional weakness. She was holding everything inside and didn’t know how to constructively deal with her feelings. This can cause major stress to the digestive system resulting in extreme pain and loss of all functional mobility. With this diagnosis she was sent home with little to no real solution or treatment plan other than counseling.
This diagnosis still did not answer all the questions as to the mobility issues, so Erika pressed on to search for more help. In August 2017 Jazzy was accepted into Stanford’s Pain Management clinic. They worked with her multiple times a week and in addition to the “Functional Abdominal Pain” she was also diagnosed with “Conversion Disorder”. This condition does explain the mobility issues as the brain can “rewire” itself and basically trap herself inside her own body. Without the proper treatment, there is a high risk that this condition may become more permanent and irreversible. Although they were making some progress, the Stanford doctors felt that the long drives from Gilroy to Palo Alto and only being able to see her a couple time a week were insufficient to produce the results they were hoping for. They felt Jazzy needed a more specialized in-patient program at UCLA that is on the cutting edge of this new medical/psychological problem being faced by many of America's pre-adolescents.
Unfortunately, Jazzy's insurance did not cover the program at all, but with the great efforts of the doctors at Stanford she was finally able to get the insurance authorization needed to start this program and was enrolled November 3rd. There they have been able to get Jazzy off of the NG tube and back onto a normal diet, but are still working on teaching her how to walk again and work through the emotional blocks that she is currently experiencing. There is still no estimated date of her release from this program since it is all dependent on Jazzy’s progress.
Erika is grateful for the support she has received at work, but she has used all of her paid time off and FLMA and has depleted all her savings. Through all this she was able to somehow pay the mortgage and basic bills, but is now at risk of severe financial crises. She has many unpaid medical bills from the prior hospitalizations, the Stanford program, and of course the UCLA inpatient bills. Jazzy will still need intensive treatment when she comes home including doctor visits and therapy appts at least 4-5 times per week.
Erika’s family and friends are asking for $25,000 in donations for Jazzy and her family to be able to get the intensive care she needs in the UCLA program, and for ongoing expenses once Jazzy is stable enough to come home and continue her care in the bay area.
If this story moves you, please help. There are lots of things in life we can’t do anything about… but we can come together to give Jazzy a real shot at a full recovery. She is such a special kid who just wants to be back in middle school with her friends. She has missed her 5th grade graduation and a half a year of school already – it is critical she gets the best care available to overcome this condition. She is eager and willing to fight through this and has demonstrated that every day. She is positive that she will get better and continues to make plans for the future about what sports and activities she wants to do next year. Help us help her make her plans a reality. Please give generously and know that you are blessing a great kid and a dedicated hard-working single mom during the biggest hardship of their lives.
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