My name is Luciana De Souza Lima. I had been married for about 15 years when we had our first daughter, Sophie. It had taken so long for me to have my first child that at the time, I thought I could not have babies at all! Sophie was born on October 2012 and in every way, she came as a blessing to my heart and arms! My little Sophie was a miracle sent from God. After she was born, it was required to do the Otoacoustic Emissions (OAE) hearing screening at the hospital. Sophie did not pass the hearing screening and was then referred to do the Auditory Brainstem Response (ABR). After the ABR results, Sophie was diagnosed with bilateral hearing loss (moderate to severe in the right ear and severe to profound in the left ear). Today, Sophie wears bilateral hearing aids.
On January 2018, Cryo-Cell (the umbilical cord and blood tissue bank where I stored the organ) emailed me and said that Duke University, in North Carolina, received the FDA grant to extend the study of the umbilical cord and blood tissue (to individuals who stored their own organs or from siblings, same mother and same father) for children on the Autism Spectrum Disorder (ASD). I contacted Duke University and they provided me with all the information about the research, treatment, and costs. The treatment is called the Expanded Access Protocol.
According with Duke University, this treatment is a breakthrough medical procedure where Stem Cells (cellular building blocks) are usually administered intravenously and subcutaneously (under the skin) in ASD patients.
Following the treatment, the Fetal Stem Cells will travel throughout the body, detecting damaged cells and tissue and attempts to restore them. The Fetal Stem Cells can also stimulate existing normal cells and tissues to operate at a higher level of function, boosting the body’s own repair mechanisms to aid in the healing process. These highly adaptive cells then remain in the body, continually locating and repairing any damage they encounter.
The treatment will cost approximately $20,650.00 as detailed below:
$ 650.00 Cryo-cell for the transporting of specimens
$ 15,000.00 Duke University treatment
$ 5,000.00 Travel expenses - about four round trips from Florida to North Caroline
After Sophie, my family welcomed two more children, Chloe (2014) and Matthew (2016). All three of my children are adorable, amazing, and brave. All my three children are Deaf/Hard of Hearing.
After many speech and behavioral therapies, and according with the audiograms, Sophie should be able to hear and talk; however, after she entered into the Palm Beach County School District, Sophie was diagnosed with Autism Spectrum Disorder (ASD). After doing an extensive amount of research, I discovered that ASD is associated with different kinds of developmental delays, including speech and language delays, and hearing disorders. When a diagnosis of ASD is being ruled out, a hearing evaluation is one of the tests ordered by a physician. Our daughter’s case was revised – she was diagnosed with hearing loss and later, ASD. It was confirmed that Sophie’s speech and language delay is not caused by her hearing loss, but rather by her ASD.
As any child with ASD, Sophie lives in her own inner world mostly unresponsive to any external environmental stimuli. She responds to her name inconsistently. She is able to follow one-step directions when they are paired with sign language. Sophie communicates through word approximations paired with sign language and she resists eye contact, especially when she is in 'trouble'. Sophie has a hard time getting comforted when she is upset and when she is excited, she moves her legs and arms excessively.
Sophie’s auditory processing is a problem for her not only because she cannot hear; Sophie sometimes stares out the window and cannot hear me yelling her name. Sophie has difficulties initiating, engaging, and maintaining social contact with adults and children. Also Sophie shows unusual behavior such as rigidity with routines, scripted speech, and echoing, flapping, rocking, and excessive interest for certain colored pink objects.
As a mother, I am not only concerned about Sophie’s behavior, education and socialization, but also with Sophie’s safety. The shooting at Marjory Stoneman Douglas High School on February 14, 2018 concerned me because it made me question the procedures that are taken with students who are Deaf/Hard of Hearing and ASD when such events occur.
Please, per this GoFundMe account, I am kindly asking you to help my daughter, Sophie, to have this crucial treatment. Every day I struggle to buy batteries for my children’s hearing aids, costs with impressions for the hearing aids (every 3 months) and once every two years purchase new hearing aids (hearing aids with new technology - these medical expenses are not covered by our private insurance or any other insurance that I know of). My current financial limitations make me unable to pay for this treatment to my daughter. The procedure is scheduled for March 2020 at Duke University in North Carolina; however, full payment must be made in January 2020.
Please, any amount that you can donate will be greatly appreciated. Any contribution will help my little Sophie with her treatment. I sincerely have high hopes this treatment will be successful.
Luciana De Souza Lima
- Claudia Acquarelli
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