It took a year for the medical profession to believe what Steve and Stephanie had been trying to tell them: that Jessica would not eat because it was painful for her; her food was traveling to her lungs instead of her stomach. They were vindicated when the professionals gave Jessica a barium test and it revealed the liquid going directly into her lungs. Since then Jessica has had to be nourished by G-tube inserted directly into her stomach. Luckily, she is now at a very healthy weight and her lungs have cleared up.
Jessica is a very happy little four year old who has no idea she's been defined as having microcephally (small head, small brain), optic nerve hyplasia (her eyes), failure to thrive, aspirates on liquids, GERD ( Gastroesophageal reflux disease), Kyphoscolliosis and Quadriplegia cerebral palsy. She has no deformed features that usually accompany microcephally but has mental and gross motor delays. She also has hypotonia (low muscle tone) in her trunk area and high tone in her lower extremities. Doctors believe that Jessica will never walk or talk. That is one long and crushing list of disabilities.
Steve and Stephanie want to take Jessica to Germany for stem cell therapy at the XCell-Center in Cologne, Germany. They have done extensive research on this kind of therapy in many countries across the globe that offer this hope. It is not available to them in Canada or the U.S. One of the key reasons they chose this facility is because of its team of German Medical Board certified physicians. The standards imposed by the German Medical Act and European Union GMP (Good Manufacturing Practice) regulations are on par with US FDA regulations. Their specialists utilize each patient’s own bone marrow stem cells so that they have no risk of developing Graft vs Host Disease; (a potentially fatal complication in which transplanted cells launch an immunological attack on the patient). Patients who use their own stem cells also run zero risk of contracting an infectious disease from a donor.
In Jessica’s case, her stem cells would be taken from the hip by a neurosurgeon, and then injected into the spinal fluid in her lower spine. This allows the stem cells a direct route to the brain. Once there, they begin to regenerate, potentially alleviating some of Jessica’s symptoms and improving her quality of life. Other children treated at the facility have had very promising results. Steve and Stephanie read over carefully testimonials from many parents who have taken their children with cerebral palsy to the clinic for treatment. No one had anything bad to say about the experience. They all said that if you are thinking about having the treatment, don’t hesitate. Steve and Stephanie realize that this treatment won’t make Jessica magically walk and talk but there is a great chance it will help her in many areas. They are hoping that it may lower her spasticity, which is problematic for her balance when sitting. It could also decrease her drooling, which is a concern for aspiration. There are never any guarantees, but the Salmons feel that if there is any possibility that there will be an increase in Jessica’s quality of life, it is a worthwhile endeavour. If the procedure proves to be successful they will consider further treatments.
The cost is not covered by OHIP or their private insurance. The treatment alone is $8,925 Euros, which works out to approximately $13,931 CDN dollars. They figure that overall it will run about $20,000 CDN dollars after treatment, flights, accommodation and meals. The venture involves about an eight-day stay in Germany.
It is very difficult for Steve and Stephanie to ask for help. As we all know it is often easier to give than to receive. After sitting down with these two fine people, there is no doubt in my mind that they would be the first to line up if others were in need. Although they have two decent jobs, a home and some insurance coverage for Jessica, like many of us, they live from paycheck to paycheck. At present any extra funds go towards upgrading their home to accommodate all of Jessica’s needs; wheel chair ramps and wider doorways to name a couple. Steve says, “As many who know us well, they know that we try to take care of our own ‘business’ ourselves. This time we need your help. Having a child with any type of developmental/ medical problems is very hard on a family. We have had our problems and remain strong throughout. We want to do whatever is possible to help Jessica. It is very difficult to ask others for money and we want people to know that we realize that times are tough for everyone.”
If you are in a position to help the Salmons with a donation you can make a deposit at the Royal Bank under the name “ Jessica’s Journey” (Royal Bank account # 00372 (branch) 003(Royal Bank) 5019260 (account #). If you do decide to make a deposit please let them know by email at (salmonx3@gmail.com) so they have a record of who is making the donation.
A dinner/dance fundraiser has been planned for October 2nd at the Huntsville Legion just before they make their journey. The Legion has been paramount in supporting Jessica in the past. They are going to donate the hall and food for dinner. That will mean the whole $40. a ticket will go to fund the treatment.
The Salmons have just learned that the band ‘Dr Krane’ has agreed to play at the fundraiser and they are very excited about it! There are thoughts about a silent auction and 50/50 draw so if you have any experience or things to donate please let them know.
Steve, Stephanie and Jessica thank you so much for your support.
To read more about the XCell-Centre you can go online at www.xcell-center.com
Huntsville Online will be keeping you updated on Jessica’s Journey.
Karen Cassian is the arts and culture editor of the Huntsville Online.
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