Tiana's Medical Care Fund

As many of you know, our daughter Tiana has recently been battling a rare disorder called Stevens Johnson Syndrome (SJS)/Ten (Toxic Epidermal Necrolysis). If you are interested in learning more about this rare disorder you can go to: http://sjsupport.org/?page_id=451
 
As the sulfur component of the antibiotic was rejected from her body, it caused extreme burning pain of skin and mucus membranes. It progressed thru Tiana's system and from the inside out it wreaked havoc on her skin.

Red Blisters erupted over her body, secreting moisture and causing her skin to exfoliate leaving tissue and nerves raw and irritated. Tiana was clearly experiencing a serious illness. We sought help for her from multiple facilities, before arriving at Children's Hospital/UCSF Oakland where she was admitted.

In the preliminary stages of arrival, Tiana experienced frequent epidermal convulsions, agitated shaking and shivering while expressing feeling as if her body was on fire.

Some additional concerns include: scarring, organ damage, and seizure. Additionally, she could not in-jest nutrients or barely even liquid due to the blisters on her mouth and lips. The constant pain overpowered the most powerful of pain-meds-while family members could only support her as best they could -in prayer and love, as we struggled between hope and agony for our child.

The next 36 hours showed minimal relief of the pain, and a gradual decrease in convulsions. The only improvement she was able to get was an occasional hour or so of rest, then the syndrome would return. The blisters continued to become more prolific.

After three days at Children’s Hospital UCSF/Oakland Children’s Hospital conveyed they could not help her further and arranged for transfer via ambulance to St. Francis Memorial Hospital Burn Treatment Center in San Francisco.

Within one hour of her arrival at St. Francis Memorial Hospital Burn Treatment Center, her new treatment regimen included a soothing bleach bath, gauze wrap, feeding tube, biopsy and more powerful meds to reduce pain.

Her subsequent increase in rest has shown incremental improvement. However, the blisters continue to erupt on her skin. Infection is a real possibility and visitors to her room require gowns and gloves.

The damage has yet to be fully assessed at this point. Physical Therapy will be required, and other therapies as prescribed.

Therefore, the complete list of specific treatment(s) cannot be fully known at this time. What is known is Tiana is still going thru the SJS/Ten healing process which may continue for an undetermined period of time (days, weeks, months and perhaps up to a year).

Financial needs are immediate and expected to be ongoing. In continuing support of Tiana's healing, both parents have exhausted PTO and Vacation time and anticipate and are in the process of applying for family leave from their employment. Although a current insurance is in place, the co-pay/coverage-cap amounts are uncertain, and this may result in additional financial burden.

It is well known that a primary motivation for remaining employed is to fulfill financial obligations. These obligations continue even during times of sudden extreme illness. It may be that nothing in life prepares a parent, for seeing their loved one- their only child, suffer- until it happens. And then -somehow-we try to get thru it.

It has already been shown that the extent and duration of Tiana's treatment is unknown. Likewise, the duration of her parents’ time away from employment is also unknown. Funds received from this site will be utilized as necessary to preserve the staple financial obligations (to maintain solvency and current payments of residence & auto), so as not to cause irrep reparable setback, loss of assets and financial harm.

In addition, Tiana Bensman is a determined and highly accomplished high school advance placement (AP) student and recipient of multiple awards and commendations. Tiana is intent upon completing her senior year and being accepted at a college of her choosing. Even during this period of severe illness, Tiana has repeatedly expressed concern as to resumption of her studies and continuing her record of scholastic achievement, as soon as her medical team gives her permission to do so. These will require additional fees, equipment and expenditures and funds will be utilized for this purpose.

The sudden onset of this extremely rare, extremely severe and extremely painful SJS/Ten disorder has required the family to dig deep emotionally and financially to find a treatment facility that will eventually be successful in leading Tiana to recovery. This has resulted in sudden significant and severe loss of income to maintain this family’s domestic household and their offspring's academic goals. Their needs are immediate and expected to be ongoing. All funds received by the family will be gratefully utilized for this purpose.

Additionally, and in the interim your continued thoughts and prayers are gratefully appreciated. Those interested in additional resources may go to: http://sjsupport.org/ .
  • Jennifer Toothman 
    • 30 $ 
    • 44 mos
  • Barbara Brown 
    • 100 $ 
    • 44 mos
  • Shelley Pavela 
    • 100 $ 
    • 45 mos
  • Suzanne Zarevich 
    • 50 $ 
    • 45 mos
  • Brittany  
    • 25 $ (Offline)
    • 45 mos
See all

Organizer

Anna Bensman 
Organizer
Manteca, CA
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