because of Keira's medical condition she will be in need of an additional wig very soon. Keira has a condition called Ectodermal dysplasia. Keira will need over 18" of brown or blond hair. Kiera will need approx 8 oz of hair to properly finish her cranial prosthesis wig.
Ectodermal dysplasia is a group of conditions in which there is abnormal development of the skin, hair, nails, teeth, or sweat glands. K
People with ectodermal dysplasia may not sweat or may have decreased sweating because of a lack of sweat glands.
Children with the disease may have difficulty controlling fevers. Mild illness can produce extremely high fevers, because the skin cannot sweat and control temperature properly.
Affected adults are unable to tolerate a warm environment and need special measures to keep a normal body temperature.
Other symptoms include:
Abnormal or missing teeth
Absent or decreased tears
Decreased skin color (pigment)
Inability to sweat
Lower than normal number of teeth
Low nasal bridge
Poor temperature regulation
Thin, sparse hair
Exams and Tests
Tests that may be done include:
Biopsy of the mucus membranes
Biopsy of the skin
Genetic testing (available for some types of this disorder)
There is no specific treatment for this disorder.
Some things you can do include:
Wear a wig and dentures to improve appearance.
Use artificial tears to replace normal tearing and prevent drying of the eyes.
Spray the nostrils with saline nose spray often to remove debris and prevent infection.
Live in a cooler climate and take cooling water baths or use water sprays to keep a normal body temperature (water evaporating from the skin replaces the cooling function of sweat evaporating from the skin).
Having ectodermal dysplasia will not shorten your lifespan, but you must pay constant attention to temperature regulation and other problems associated with this condition.
Brain damage caused by increased body temperature
Seizures caused by high fever (febrile seizures)
Anna Bell is an amazing 9 year old who is full of love and kindness. She was born with cerebral palsy and apraxia, which makes many things harder for her for her to do, but she always tries her best to keep up with her mom and dad and three older brothers. She and her family even learned sign language to make it easier to communicate. Recently, tragedy struck our sweet Anna. She was diagnosed with osteosarcoma, or bone cancer, that started in her right femur and has spread. However, she is undergoing treatment at UCSF Hospital and she's never been someone who gives up easily. Her smile is so bright that she makes the world seem full of hope. Thank you for giving her something that cheered her up and brought us all another reminder that many people care about her and want her to keep overcoming, despite her challenges!
We are helping raise funds for a special children's medical cranial prosthesis / wig that needs to be made for Mya. We are also asking for "hair donations" for Mya 18" or longer. Mya really would like to have long mermaid hair and of course we feel that Mya should get exactly what she wishes for. The cranial prosthesis we would like to make for her is a medical prosthesis and any donations would help cover the costs would be highly appreciated. Please read the story below that Mya's mother Jessica has shared. We hope that Mya will touch your heart and you will find it in your heart to help her have the "hair of her dreams" All and any donations are truly appreciated and welcome. Please send your hair donations to:
Hair Couture Designs
Mya's Hair Fund
795 Camarillo Springs Rd
Camarillo, CA 93012
Febuary 14th 2012 Valentines day morning. 2 year old Mya was involved in a home electrical fire that started in the familys attic and quickly to the floor where 2 year old Mya her 3 year old brother Christopher and 8 Month pregnant mother slept. with in minutes the floor they were sleeping was ingulfed in fire and black smoke. Mother Jessica Castillo and Brother Christopher Castillo were able to escape the home. Mya fainted from smoke inhalation while mother and next door neibor ran up and down the stairs to find Mya. minutes later the fire department arrived and took Mya out of the home.mother and son were treated for smoke inhalation. Christopher was discharged while mother in labor went to a hospital and daughter went out of state to a Loyola burn icu in Chicago il. Little Mya received a collapsed lung sever smoke inhalation and 3rd degree burns to the muscel of 50% of her body mainly her whole front, chest face and head being the worst of the burn areas. Mya spent 6 months in burn icu fighting off infections and a rare infection called ,sutamonus, a bacteria infection resistant to antibiotics.This infection ran throw Myas skin then Urin then altamitally Myas blood. With the burns being so sever and this horrible infection on top of this brave little 2 year old all we could do was pray for a miracle trust in God and the good people of Loyola hospital. Mya has a spirit no one knew and she faught throw all these life threathing things and after almost 20 serious life saving surgerys Mya was ready for rehab:) Mya spent her 3rd birthday at la rabida childrens hospital where she learned how to eat walk talk and eventually even dance again:) she was reunited with her worried brother Christopher for the first time and her new sister Bella. after only a few months in rehab Mya was able to be out patent and return home to her mother and father family. To know Mya is to love her. She is so happy. She is the most caring beautiful little girl. she loves beautiful things like flowers fairys princesses happily ever afters shes a huge weddings prince charming, Disney fan loves her family the color pink and is a all around girly girl. Mya just wants hair to be like the princesses she adores so much to be like her mommy and baby sister. Mya has been through so much pain too much for someone so pure hearted and small myas starting kindergarden soon and shes afraid she wont be excepted. ,All she wants is to go to school like her big brother and make some friends but shes so worried the way she looks kids will laugh at her or worse please help bring self esteme to mya so her first day at school can be what she hopes it will be thank you here are some pictures of Mya thank you you dont know how much this means to this little girl
Jessica & Mya Castillo