When Trevor was first diagnosed in June 2010 we were shocked and in disbelief. He was very uncomfortable and crying 15 hours a day. We were advised by the diagnosing physician that he would progressively get worse and that we should “call hospice and give serious consideration to sedation.” We left the hospital stunned, confused and with very little hope for his and our future.
It was not until we began searching for doctors with experience in caring for these special children and locating other families who were affected by this horrible disease did we start to see the first rays of hope for our family.
We first attended the Hunter’s Hope Family and Medical Symposium in 2010. After meeting and instantly bonding with many of the families present at the symposium we came away completely reenergized. We also understood the value in finding other families that truly understand all aspects of what you are experiencing with a terminally ill child.
For this reason, Peace, Love and Trevor vows to support any newly diagnosed family that just wants a shoulder to lean on. Please contact us at any time if you want to talk about anything.
Children with Krabbe and other lysosomal storage diseases (LSDs) have very specialized needs and require very intensive specialized care. It is not uncommon for patients to see many different specialists ranging from neurologists, gastrointestinologists, optometrists, cardiologists and various other specialists on a regular basis.
In our case, we felt most comfortable with choosing a primary physician that specializes specifically in Krabbe and other rare genetic disorders. We chose Dr. Maria Escolar, who has been Trevor’s primary doctor since August of 2009. We highly recommend any family with Krabbe or any other LSD to at least contact her by phone and give consideration to flying to Pittsburgh for a clinical examination. She has been a savior for us.
Please contact us if you want help in locating a specialist for your child or click here to find out more about doctors we recommend.
Children with Krabbe have limited muscular control due to the breakdown of the myelin coating of their nerves and the slow degenerative damage of cells in their brain. For this reason, a variety of medical equipment is required for their comfort, support and protection. Typical durable medical equipment includes wheelchairs, strollers, standing equipment, specialized chairs, and bathing support apparatus. Furthermore, suctions machines, feeding pumps and nebulizers are common.
PLT is able to provide support and advice in selecting and locating the right medical equipment to best support your child’s needs. We can also provide referrals to medical equipment providers that may be able to assist in selecting and supplying equipment.
Click here to see photos of recommended medical equipment.
PLT actively organizes fundraising events to support Krabbe families that have limited financial resources. Our corporate by-laws are very limited in how our funds can be utilized. If you are a Krabbe family, that needs financial help in obtaining medical care, testing or equipment we may be able to assist.
All applicants will be required to disclose certain financial documents, will undergo a review by our board of directors and be selected on an individual case-by-case basis. PLT has a fiscal responsibility to our donors and our board will only approve applicants whose children will directly benefit from a financial grant. Each applicant can only be approved for financial assistance once per calendar year.
The PLT Financial Assistance Online Application is currently under development. If you feel you meet all of the above criteria and would like to apply for assistance today please email Nicole Aldrian at firstname.lastname@example.org or call 619-985-5826.
Unfortunately, at this time our by-laws are restricted to helping Krabbe families only and we are unable to help children and families impacted by other lysosomal storage diseases.
Palliative Care Support
PLT is able to share ideas on things that have worked for Trevor during the course of his care. We have gained valuable insights on how to improve Trevor’s comfort and care by being open-minded to techniques and ideas from other families. These families are in the trenches everyday and often have very ingenious ways to comfort and improve their children’s quality of life.
Because there is great variability in Krabbe patients with respect to their symptoms and needs, PLT does not make recommendations concerning medications. We will certainly share the medications that Trevor has been prescribed, but each family needs to have medications prescribed by their own primary care physician.
Online Research and Forums
There is a wealth of information and resources online that can assist you in your quest to help your child. Locating doctors, equipment, and other families is very easy to do and PLT can share some of the websites and forums that have been most valuable for us. When turning to the internet for information, you need to be cautious concerning the source. There is a wide variety of information available online and in some cases it is not accurate nor is it based on sound medical science and research. Always consult with a primary care physician concerning medications and medical procedures for your child.
State Program Assistance
States vary on the different programs available to children with special needs. There is often limited information concerning the availability these programs to residents. Finding time to research the availability of state programs is very difficult while also tending to a family and a special needs child.
PLT is willing to assist you in finding information and downloading forms concerning state programs. As residents of California, we are best suited to help with programs available in California, but are willing to help direct you in other states.
Trevor has benefited tremendously from various services in California. Physical therapy, occupational therapy, medical equipment, home nursing, and respite programs are often available. As difficult as it may seem, don’t ignore the state programs that are available to you and your child.