Karuna's Here are some of the ways you can help Karuna and other children like her:
- Support Stem Cell Research. Stem cells
represent a possible cure for Karuna. Currently, the Bush administration
has severely limited funding for stem cell research. Here are
some ways to help advocate for stem cells:
- Here is Karuna's Stem Cell Support Page. This page is part of CNS's "Reality Snapshots" campaign, providing stories of how stem cells can help neurologically impaired children.
- Visit www.stempac.com for more information on stem cell research. Karuna's story ws a featured story and she appeared in their advertisments! Click on www.stempac.com/stories or HERE to get to the story directly.
- Add Karuna's Stem Cell Support Banner (below)
to your webpage. Control-option-click (Mac) or Right-click
(PC) on the image below or CLICK
HERE to open the image alone.
- Donate MONEY or TIME to pediatric brain research.
We support Children's Neurobiological
Solutions, a not-for-profit organization which funds and advocates
for brain research, recognizing that both brain regeneration and
repair are possible. Here is Karuna's
Direct Donation Page. Click on "Support Rishi, Susan,
and Karuna" to donate or Click
Here.
- Give BLOOD. Karuna received almost daily
transfusions of blood products during her first weeks of life.
Although your blood will probably not go to Karuna, it will help
another sick child or adult to survive. Contact your local Red
Cross.
- Help the family of a special needs child
like Karuna with daily care tasks, including cleaning, transportation
to medical and therapy appointments, assisting with shopping,
or providing much needed respite.
- Write to your legislators in support
of stem cell research, pediatric brain research, and special education
funding. The Bush administration has not guaranteed funding for
special education or stem cells. Keep the pressure on your local,
state, and federal governments to support these issues and other
issues vital to special needs kids like Karuna.
Clothing Guidelines for Karuna
Because of Karuna's new TLSO (back brace), her GJ tube, central line, and high tone, clothing can be difficult for Karuna. Please use these recommendations before purchasing clothing for her. She currently wears a 4T.
SHIRTS: Karuna wears thin shirts under her TLSO. Shirts must be cotton-based and contain no decorations or ornamentation (such as beads, ribbing, bows, etc.) of the shirt itself because these will press into Karuna's skin when her brace is on. Decorations are fine at the collar or on the sleeves. On cold days, she sometimes wears a shirt over the brace. These shirts must be long in length and wide in body to go over the brace. Sweatshirts, zip or button-front shirts work great.
SHORTS: Karuna wears regular shorts that are designed to fit over a diaper (toddler sizes) or any stretchy shorts.
PANTS: Karuna wears regular pants designed to fit over a diaper (toddler sizes). She wears a lot of loose-fitting leggings or sweat pants because these are easier to get over her hips. The best pants have wide or flared ankles to easily fit over her AFOs.
SKIRTS: Karuna wears regular skirts, but no mini-skirts.
DRESSES: Karuna usually only wears dresses on special occasions. Dresses must be long (knee-length).
ONE-PIECE OUTFITS: Karuna does not wear any one-piece outfits because we cannot access her tubes/lines. She does wear overalls, as long as they are baggy and can fit over her brace.
SOCKS: Karuna wears socks that go almost up to her knees (one inch below knee) under her AFOs.
SHOES: Impossible to find! They need to fit over her AFOs, so don't even bother trying.
SWIM-WEAR: Karuna cannot go swimming with her line so no swim-wear is needed.
COATS: Heavy coats need to have detachable hoods and be as flat (not puffy or down-filled) as possible. They need generous arm holes. Light coats can have attached hoods.
Including Karuna in Your Will or Donating to her Trust
Karuna is currently in the process of having a Special Needs Trust created for her. This Trust will preserve any assets she has in an account used to pay for her medical and special needs. The trust is designed to preserve her access to public benefits such as Medicaid and SSI. We expect Karuna to be fully dependent on Medicaid in the next few years because her private insurance (BCBS) has a $2 million limit that will be exhausted in not too long.
IT IS VITAL THAT KARUNA REMAIN ELIGIBLE FOR PUBLIC BENEFITS OR SHE WILL NOT HAVE ANY HEALTH INSURANCE.
If you wish to leave money to Karuna or donate to her trust, please contact us for information on the language you need to use in your legal documents or for access to the trust. We expect the Trust to be completed by this summer.
Please do NOT leave any money or items directly to Karuna. Doing so will make her ineligible for public benefits. Money/items must be left to her Trust ONLY. Alternately, money for her can be left to or donated to any other family member, Rishi, Susan, or Samee.