The 3 year old grandson of a SOLACE member has Osteogenisis imperfecta (brittle bone disease). Over Thanksgiving he broke his femur. This is the fifth time young Joseph has broken a bone. He is about to be released from the hospital with a spica cast and will be basically immobile. He can't be released, however, until he has a wheel chair.
The family lives in Thibodeaux and both parents work. As one can imagined, the family is somewhat overwhelmed.
The family needs a child's wheel chair that reclines. Joseph's parents are also looking for babysitting assistance, and any information and guidance on Osteogenisis imperfecta.
Just wanted to give you an update on my grandson. The response from the SOLACE community was heartwarming. The email got to a medical equipment company in Thibodaux and as it turns out the folks happened to be friends of my son in law.....They were at their house the next day measuring Joseph for his wheelchair. There were many other offers of assistance but most importantly there were several people who have had Osteogenisis imperfecta in their lives that offered to speak with my daughter and pass on advice. I can't thank the SOLACE community enough for its kindness and generosity......
Dear SOLACE members,
The 33 year old brother of a Loyola Law student has been waiting for a heart transplant for over a year. He is using an artificial heart pump.
He was removed from the heart list last week because his insurance ran out.
He has no way of paying for medications and the maintenance of his life support should there be any problems with his pump. He does not qualify for medicare for another 11 months and because he worked he gets $1,000 in disability a month, so he does not qualify for Medicaid.
1) Gift cards to Walgreen's: If he purchases his medications at Walgreens, they offer a 90 supply plan which only costs him $190 per month.
2) He was on the heart transplant list at Oschner but was taken off the list when Blue Cross dropped his coverage. If someone knows someone at Oschner who would be willing to put him back on the transplant list during this interim period (11 months before Medicare kicks in) that would be a blessing. He has been on the wait list since June 2010 and was finally Number 1 on the list. If he is off the list for 11 months, he will then again be placed at the bottom of the wait list.
3) He needs "wound care supplies." He has an artificial heart pump inserted in his chest with an electrical line running out of his stomach. Wound care supplies such as: gloves, sterile water, tape, gauze, etc. or needed.
4) Gas cards to get back and forth to the LSU Clinic in Bogalusa where he is going now for infections because of not having health insurance.
5) Someone who is familiar and has the time to assist him with his Blue Cross, Medicaid and Medicare paperwork. He is receiving $1000 per month in social security disability so he is not eligible for Medicare for 11 more months. He is not eligible for Medicaid because the cap is $650 per month. Even if he could qualify for Medicaid, he would give up all future rights to Medicare.
6) Gift cards for food would be appreciated to buy basic necessities.
Follow up sent 9/27/2011 at 7:36 p.m.
Dear SOLACE members,
As you may recall, a SOLACE request was recently sent on behalf of a law student's brother with an artificial heart who has numerous needs.
The following is a letter from the law student's mother:
I want to express my deepest appreciation for all that the legal community has done for my son Ian. The appeal to the legal community through SOLACE was a lifesaver. He was able to get his insurance back and be put back on the heart list. Without the assistance of the SOLACE community I know this would not have happened.
Many members helped us with Walgreens gift cards; VISA cards for gas. And even though money was not requested, some people were even so kind as to send checks. The checks he has received are being used to help cover the increase in Ian’s insurance premium and expenses not covered by insurance. Knowing that there are funds to cover the additional insurance premium has given us a great sense of relief.
Since the initial SOLACE appeal Ian has had two bad infections in his leg resulting in him being hospitalized twice. He was also put on a CPAP machine for sleep apnea. Because of the kindness of the SOLACE members, the means and the funds were there to address these issues.
The last four years have been a long road and we still have a ways to go but as a mom I cannot begin to tell you how grateful I am to SOLACE. The overwhelming care and love from the organization has touched our entire family and has brought us tremendous comfort. Please express my gratitude to all the members.
Thank you so very much