Recently Alesa was diagnosed as having the Shiga Toxin type I, II and e-coli. The past nine months she’s been on Cellcept, 500 mg twice a day which is an immunosuppressant. The hope was to weaken her immune system so that her Scleroderma would not continue to spread. Unfortunately, she has now been suffering for the past 5 weeks with Diarrhea, lack of appetite, major stomach pain and at one point she had blood in her stool. We have been at Phoenix Children’s Hospital for 14 days thus far and her body has not been able to fight the toxin. The bug is gone, but the toxin is still there. The Cellcepts was just stopped in the hopes that a strong immune system will be better able to fight the toxin. Unfortunately a PICC line had to be started for nutrition purposes and because on average she’s been losing ½ a lb per day. Once she’s better, they’ll put her back on the Cellcept but as we just experienced, anyone who’s system is weaken can catch a bug but unlike us, they’re not able to fight it off right away and a small illness can land them in the hospital causing them major pain and a long recovery time and for us a major hospital bill. We’ll continue to be here until her test results come back negative and even then, we’ll need to be here until her diarrhea is gone, her stomach pain is gone and she’s no longer taking pain killers. Prior to coming to the hospital Alesa had just started Radiation in the hopes that it will put her back into remission.
Our monthly bills include her Radiation, Rheumatologist, Dermatologist, Gastrointestinal specialist, Pulmonologist, Occupational Therapy, Deep Tissue Massage Therapy, Blood Work, Ultra Sounds, outpatient Solumedrol Infusions, anti-rejection & Inflammation meds, Prescription skin lotions, Radiation meds not covered by insurance, supplements, Celiac special diet, asthma and allergy medicine, co-pays for medicine, 10% of bill not covered by insurance, SPF clothing, along with the cost of driving and after we leave the hospital she’ll need to go to the cardiologist and have an endoscopy to rule out fibrosis on her organs. Due to her photochemotherapy, she has to wear special SPF 50+ clothing and gloves to prevent skin cancer. We were told they are doing all they can and there’s nothing else they can do for her Scleroderma and that they don’t know why its advancing so quickly and why the medicine is not working so I continue to look for other specialists, alternative medicine, supplements, etc. We also need to pay the hospital bill which has a $3000 deductible before our insurance will pay 90% of the bill plus our $500 co-pay and so far our 10% estimate is $8000. Please help us in any way that you can to pay for not only her hospital bill but also for her $2700 monthly medical costs. Every donation no matter how small makes a difference!!!
Since her Scleroderma continues to progress quite rapidly we tried to find a Scleroderma Specialist close to home and there is one here in Scottsdale at the Mayo Clinic but he will not see anyone under 18. We called the Scleroderma foundation and they told us the best Juvenile Scleroderma specialist is in New York but he's not covered under her insurance so the consult must be paid in cash, we would love to take her to see what additional measures can be done and to see if possibly stem cell transplant might be the way to go if she continues to deteriorate, but we need to raise the funds to take her. They also highly recommended that we attend the National Patient Scleroderma Conference July 27-29 in Dallas, TX where we’ll have the opportunity to meet renowned Scleroderma researcher & clinicians from around the world. They'll be over 50 workshops available, all led by top scleroderma experts & health care professionals. We'll learn about treatments, disease management and coping techniques and we'll have the opportunity to meet with hundreds of people living with scleroderma and their families. It’s $430 for both of us to attend the seminar including the hotel stay & all meals plus they'll be the extra expense of driving. We are trying to raise funds to cover all of her expenses, please help us make this possible by donating.
About our family:
8 years ago Josh asked me & my 3 children to marry him. He had one daughter and with my 3 life was complete. I could not get pregnant so we decided that 4 children were enough of a blessing. Over 5 years ago we were asked at church if we’d be willing to become foster parents. We prayed and after talking to our children we decided we could help to foster one child at a time. Shortly after being licensed we became foster parents to 3 & 4 year old siblings. They were with us for a year before being adopted. We then had a newborn for a month, a 2 yr. old for a year. Found out our original siblings were back in the system and asked they come back to live with us. After a total of 14 placements they came back to our home. A few years later we received a call that a 2 yr. old needed a home and no one would take her, we did, and 5 months later we received a call that she had a 10 mo. old brother who was adoptable and were we interested. I immediately said yes without calling my husband. We adopted him a year ago this May and are waiting to hear of our court date to adopt his now 5 year old sister in a few months. We’ve also provided long term respite for a 9 month old and 11 & 9 yr. old brothers. So we went from 4 children to 8 in the blink of an eye and we’ve loved every minute of it. Unfortunately my 2nd oldest was diagnosed with Linear Scleroderma almost 3 years ago. She went into remission after starting on Prednisone and remained that way until 9 months ago. Her Scleroderma came back with a vengeance and we are struggling to meet her monthly medical bills. It has been a struggle to juggle all her medical appointments along with our foster children’s weekly therapy, behavior coach, art therapy, our weekly trauma and bonding classes, bi-weekly CFT meetings, licensing worker and CPS’ monthly visit, monthly psychiatrist and asthma and allergy doctor, dental and unexpected doctor’s visits along with our own children’s activities such as scouts, mutual, piano, dental appointments, doctor’s appointments, medicine co-pays, church activities, etc…We have been blessed beyond measure by doing a great service in fostering children and it has truly been an honor to serve them. I would like to keep doing it, especially since our 8 yr. old foster daughter has now been with us for over 4 years and they are in the process of finding an adoptive home for her and brother. Although I felt too proud to ask at the beginning for financial help, it has now become a necessity and I have come to realize that we cannot do it on our own, that my daughter is worth it and there’s nothing more important to me than her health!
I remember right after giving birth to Alesa, counting her fingers and toes. As a mom, I never imagined that my little girl would grow up to battle a terrible disease. It’s hard for me to imagine that unless she goes into remission she won’t be able to do the normal things she should be able to do. It’s hard to imagine her fingers, hand, arm and back not having any muscle, when I’d look at her I would just see skin and bones and it saddens me to think that this disease can progress to other parts of her body possibly including her organs. Alesa suffers from both Linear Scleroderma and Raynaud’s disease. Scleroderma is an incurable auto immune disorder. There are around 300,000 people with Scleroderma but it is so rare in children that no numbers exist. An autoimmune disorder occurs when your body mistakes healthy cells as bad ones and it start invading them. The cause of Scleroderma is unknown but you can’t catch it from other people. Scleroderma is a progressive disease that affects the skin and connective tissue, basically there’s an overproduction of abnormal collagen in the skin, tendons, blood vessels and some internal organs. This rare disease damages the cells lining, small arteries and it produces an abnormal buildup of fibrosis which is scar tissue in the skin. It can cause minor to major disfiguration. Her disease has literally eaten away the cartilage, bone, fat, tendons and the tissue that supports the nerves and blood vessels on her fingers, hand, wrist, arm and it is now progressing to her shoulder and down her back; her skin is becoming more discolored and every day it gets one step closer towards loosing the muscle and her skin becoming shiny, taut and hard. She’s lost the muscle and tissue on her last three fingers thus far and they are curled down to where they look like arthritis patients and her skin is becoming hard. The tendon's on the inside of her hand are hard, pocking out since they are becoming shorter as the muscle eats them away and are more noticebla as the muscle is dissapearing. She’s also lost the muscle and tissue from most of the top of her hand. Her arm is discolored, very skinny, has lost half of its muscle and tissue and all of her skin on her arm and hand are now hardening. She cannot raise her hand up because her wrist is now fused nor can she move it from side to side. Her range in motion (turning her arm) has diminished due to the tightening of the skin. Our hope is for her to go into remission as soon as possible since she can never regain what she’s lost. This disease causes pain, which can go from subtle to extremely debilitating pain. It also causes inflammation of the area that’s being affected. Alesa’s Scleroderma causes her shooting pains, cramping, nausea, stomach problems, fatigue, lack of energy, general weakness, aching muscles, bone pain, muscle weakness, joint pain and stiffness, skin discoloration and carpal tunnel syndrome and her doctors also suspect it might be in her digestive tract so she’ll be tested for systemic scleroderma in a few months. Carpal tunnel syndrome is currently scarring Alesa’s wrist, which puts pressure on the median nerve running through that area. Pressure on her nerve causes numbness, tingling and weakness in some of her fingers and she’s lost complete feeling on the side of her ring finger. As scar tissue sets in, it has and will continue to affects the mobility of the joints in her fingers, wrist, elbow and arm. It also affects the growth of a limb, meaning that her bones will most likely not grow to their full potential due to the scar tissue and the restriction and/or hardening of her skin. In around 80% of all patients with Scleroderma, the lungs are affected, making it the leading cause of death and disability. Symptoms include some shortness of breath, particularly after exercise and there may be a persistent dry cough, which Alesa has experienced by coughing excessively for up to an hour after running. She’s had tests done which show her lungs are working at a 60 percent capacity. They believe this is due to fibrosis but further tests are needed. Scleroderma can affect the way you look, how you feel about yourself, how you take care of yourself, family relationships and having a baby. Alesa has missed a lot of school due to all of her doctor’s appointments, illness and being in the hospital but she has managed to keep up with her A.P. classes, choir, National Junior Honor Society, piano and track. She gave up playing the Cello which she loved and had done since 4th grade but she could no longer hold the boa for more than a few minutes without getting horrible shooting pains and finger cramps. It limits how long she can write, also her fingers won't extend to type the proper way so she just types with two fingers, she has limits but she tries to work around them. Soon, she'll need to learn to write with her left hand so she can be prepared for the day when she can no longer use her right hand. All of her teachers have been so kind, understanding and they accommodate her where needed and for that, we are grateful!
Alesa also suffers from a condition called Raynaud's phenomenon. This disease is a condition that causes some areas of your body such as your fingers, toes, the tip of your nose and your ears to go numb and cool in response to cold temperatures or stress causing pain.The blood vessels of the fingers and/or toes (the digits) react to cold in an abnormal way resulting from spasms within the small blood vessels of the fingers and toes making them turn white, red and blue in response to being in a cold environment or when holding ice or even a cold drinking glass. Because the vessels clamp down, preventing blood flow to the tip of the finger, it makes it so that eventually, the flow is cut off to the entire finger or toe. Over time, oxygen deprivation may result in open ulcers on the skin surface. These ulcers can lead to tissue death (gangrene) and loss of the finger. During the winter time, Alesa has to wear 2 gloves and even hand heaters inside her gloves but even preventative measures have landed us in the Phoenix Children’s Urgent Care after her fingers turned completely white and we feared loss of her fingers.
Please donate through Pay Pal. You can donate with your credit card as a Guest on PayPal (no PayPal account required). After you click "Contribute" on the campaign, you'll be taken to a PayPal screen. At the top, you’ll see "Choose a Way To Pay." Click on "Pay with a credit or debit card." Uncheck the box that says "Save this information with a PayPal account. It's easy and free to sign up. Learn more about PayPal." Then proceed to donate as a Guest.
Many of you asked how you could help; please forward the website www.prayforalesa.com to every one you know. Talk to people, your neighbors, loved ones, ask your company for a charitable contribution and then ask co-workers, your boss, and church members etc. to donate. You can even set up a donation jar at work. We are trying to raise funds to cover all of her expenses, please help us make this possible by donating in any way you can. With the economy the way it is, I know a lot of people are struggling but if you haven’t donated because you thought it needed to be a large amount, know that even a small donation from a lot of people is better than one larger donation from a few people. Please donate at least $1. It will take 5 minutes to donate through pay pal with your debit, credit card or directly from your bank account. It's secure and you do not need a pay pal account to donate. A few days ago, I ran into a lady at the hospital who told me a friend of hers did a fundraiser for her. She asked all of her “friends” on Facebook to donate what they could but to at least donate $1 then she asked them, to ask each of their FB friends to donate $1. Each person is in charge of making sure each of their friends have donated at least $1 or if for example they have 200 Facebook friends they are in charge of making sure at least $200 are raised. The lady told me in a month they raised $50,000. Let’s make this trip to the specialists, paying her $2700 monthly medical bills and attending the conference a reality for my little angel. Let’s give her hope and the best medical advice she can receive so we can put her back into remission!
If you feel inclined to help even further, even if you don't have a Facebook account, set up an amount that you would like to raise. Call everyone you know and ask them to donate and/or help in any way they can. Please don't dismiss this thinking someone else will or can do it. Everyone needs blessings and you will truly be blessed for taking the time to not only forward it but by coming back to the website and tracking who's donated, you can see who needs a gentle reminder or call them and ask how they can help. If you have a special talent such as knitting, quilting, cooking, baking, piano, photography, tech support, baby sitting, or even washing windows, cleaning a house or whatever you'd be willing to do to use your talents to raise funds I would be eternally grateful! I am already very busy so I would love your help in setting up and following through on fund raisers. I've heard of ideas such as having people donate items they no longer need then having a yard sale, holding a walk or run a thon, having a bake sale, asking a restaurant, pizza, yogurt or movie theater to donate a percentage of sales earned from one night or calling Walgreens, CVS or other pharmacy's headquarters and asking them if you could put a donation jar at the pharmacy's around the area. If you own your own business, place a donation jar, ask your employees for a donation. If you're willing; sell items no longer needed, baby sit several children with a friend for a day or night then donate what you earned, pick up an extra shift or two and donate the money or skip date night and donate the money you would have spent, if you normally buy lunch take left overs to work, mow someone's lawn or ask friends from school to donate money or recruit school friends or young men/women from church and raise some money. If you have gift cards you no longer need, donate them to us, ask a grocery store or gas station to donate a gift card we could use or anything else that you can think of to do, to help us out, we'd be eternally grateful. These are all great ideas but with me being as busy as I am, I wish I could pursue setting up some of these things. If someone would volunteer, I would love to help, any way I can.
I thank you in advance for your generosity and willingness to help.
It's amazing to have such generous people in this world! It's also amazing to belong to a church where we are all brother's and sisters and are willing to help each other out, even if we don't know one another. It's nice to now we can rely on each other and that we're not alone. A while back I read in "Daughters in my Kingdom" something that stuck with me and I'd like to share with you:
When the first pioneer companies arrived in the Salt Lake Valley, they planted crops and built shelters for their own survival. They also turned to meeting the needs of others. President Brigham Young counseled the Saints to assist those in need, both spiritually and temporally. His counsel was like Amulek’s exhortation in the Book of Mormon to the impoverished Zoramites: “If ye turn away the needy, and the naked, and visit not the sick and afflicted, and impart of your substance, if ye have, to those who stand in need—I say unto you, if ye do not any of these things, behold, your prayer is vain, and availeth you nothing, and ye are as hypocrites who do deny the faith.”
Sister Emmeline B. Wells, who later served as the fifth Relief Society general president, described the goodness and service of the sisters: “When the Saints left Nauvoo and during their journeyings, the Relief Society meetings were necessarily discontinued, though the sisters never lost sight of the institution, nor the promises made to them by President Joseph Smith, but continued their benevolent work wherever and whenever an opportunity presented itself; they were always ready with willing hands and tender sympathies to perform deeds of love and charity, and many were in need of such kindly acts for those were the days of toil, and of suffering, of scarcity and of hardship.”
Latter-day Saint women followed the charitable feelings of their hearts and gave service to meet the needs of those around them, many groups were established in those settlements to serve others and relieve the poor.
Lucy Meserve Smith, for example, led a group of Latter-day Saint women in Provo, Utah. She and other sisters responded to calls to help Latter-day Saints who arrived in Utah. At the October 1856 general conference, President Brigham Young announced that handcart pioneers were stranded hundreds of miles away. He declared: “Your faith, religion, and profession of religion, will never save one soul of you in the celestial kingdom of our God, unless you carry out just such principles as I am now teaching you. Go and bring in those people now on the plains, and attend strictly to those things which we call temporal, or temporal duties, otherwise your faith will be in vain.
Sister Smith recorded in her autobiography that after President Young’s exhortation, those in attendance took action to provide relief for their brothers and sisters. Women “stripped off their petticoats [large underskirts that were part of the fashion of the day and that also provided warmth], stockings, and every thing they could spare, right there in the Tabernacle, and piled [them] into the wagons to send to the Saints in the mountains.”
They continued to gather bedding and clothing for Saints who would arrive with only a few belongings in small handcarts. Sister Smith wrote: “We did all we could, with the aid of the good brethren and sisters, to comfort the needy as they came in with handcarts late in the fall. … As our society was short of funds then, we could not do much, but the four bishops could hardly carry the bedding and other clothing we got together the first time we met. We did not cease our exertions [un]til all were made comfortable.” Sister Smith said that when the handcart companies arrived, a building in the town was “loaded with provisions for them.” She continued: “I never took more satisfaction and, I might say, pleasure in any labor I ever performed in my life, such a unanimity of feeling prevailed. I only had to go into a store and make my wants known; if it was cloth, it was measured off without charge. [We] wallowed through the snow until our clothes were wet a foot high to get things together.”
These Relief Society sisters manifested charity, “the pure love of Christ,” as they donated their petticoats and pieced quilts to save freezing, starving Saints whom they had never met. They found great joy in this service. After they had done all they could to help the handcart pioneers, they continued to help others. Lucy Meserve Smith’s words expressed the feelings of their hearts: “What comes next for willing hands to do? This question epitomizes the goodness of Relief Society women—then and now.
Contact the Organizer