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Love for Cooper
49 Donors

-19837 Days Left

Love for Cooper

Raised: $1,240.00 / Goal: $4,000.00

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Dear I’m Shelby I am 18 years old, living in Australia. Edit: Please make sure to leave your details at checkout if you've asked for backer rewards. We can not ensure that you will receive email rewards if you are anonymous. I’m writing to you to ask you all for your help and support with a potential donation drive for my special friend, who I am close to and have known for a while now. Cooper Van Der Molen was born 4 years ago on October 1st but was not born a well child - soon after birth, Coopers legs were plastered due to a deformity in his feet and legs. He was having seizures, skin problems and they soon discovered that Cooper had no sweat glands - basically, he’s allergic to the sun and to heat. Not only that, but Coopers problems continue to grow. Although he is 4 years old, he still has the skills of a toddler. He can’t walk or speak, but can use some sign language to tell us what he wants and is slowly learning to use a speech machine which he uses to tell us he wants vegemite toast - his favorite food. Cooper is fed primarily through a tube inserted into his stomach which has a plug above his belly button. With this stomach plug he is also given pain killers. I’ve known Cooper for almost a year now. We became fast friends and he even developed a sign in his sign language for me. I’ve baby sat him (A first, since no one has ever baby sat him before) and taken care of him many times. I’ve seen his problems first hand. The biggest issue now is that they can’t pin point exactly what sort of problems he has - sub classifications that require genetic testing to pin point. Cooper loves it when he sees me in cosplay, and his favorite characters in the world would be Spiderman, Mickey Mouse and the smurfs. Previously, a melbourne cosplaying/fandom type group ‘The Cuties of Melbourne’ assisted in raising funds for him to help purchase a mobility bike. We raised $60 between our little group out of the $1600 needed. We’re looking for donations or fundraising ideas to dramatically help this family in many ways. They could buy him new equipment to aid his learning, help pay for some of the family bills (having a baby like Cooper is expensive and tough on his family) and maybe even find some way to get him private genetic testing so they can pinpoint his exact illnesses and get him the help he needs. I hope you guys want to help out! With love! Coopers page: (Full list of his known issues problems: Cooper Van Der Molen has dry eyes, Hypotonia, Developmental delay, Chronic constipation and small bowl dysfunction, Feeding Issues and now has a PEG, Atopic dermatitis, House dust mite sensitisation, Abnormal development of ectodermal structures with hypodontia (has only 3 tooth buds) 2 of which he has got now. Hypotrichosis, Suspected hypohidrosis, 2010 x-ray showed mild plagiocephaly, mild lumbar scoliosis and some changes in the long bones, 2010 brain MRI showed mild asymmetric dilatation of lateral ventricles, bilateral white matter hyperintensity in the posterior regions and absence of the posterior pituitary bright spot. Hearing- right consistent within excessively mobile tympanic membrane. Testing with headphones suggested a mild high frequency hearing loss. Left- consistent with normal middle ear function. Features- macrocephaly with high forehead, short nose with depressed nasal bridge, small mouth with full lips, sparse eyelashes and eyebrows with fine and sparse hair, high palate, left preauricular tubercle and dry skin.Trichoschisis, camptodactyly and he was also diagnosed with Ectodermal Displasia. He has absent type seizures, which the neurogolist says are more than likely to be reflex anoxic seizures. ED(Ectodermal Dysplasia) is a genetic condition that affects various structures of the body. The condition impacts range from minor to those that have fatal consequences. Body structures which are affected by ED include hair, teeth, nails, glands (sweat and tear), skin, muscles and ligaments. The ability to cool due to lack of sweat glands is a prime concern for our members and the use of air conditioning, cool vests and other cooling devices is a priority. Our children also may face many years of dental treatment due to lack of teeth, this may involve dentures and dental implants. These are who he sees Paediatrician, dietician, neurologist, genetics, metabolic, Orthopaedic, dermatologist, audiology, eye clinic, plastic department, occupational therapist, physio therapist, speech therapist, dentist, social worker, Allergy and Immunology, Stomal therapy, Endocrinology and Gastrology. )