free web stats
Because every family deserves the blessing of a child with Down Syndrome...
RR Blog Twitter Facebook Official Facebook Group The RR Shop RSS Feed

Orphanage 26


Girl, Born March 8, 2006

So glad to have an updated picture of Janie!  She is blessed to still be at the baby house, but she will remain bedridden for the rest of her life is she is transferred.
Janie is a beautiful little girl who struggles with the effects of FAS.    She also has CP and some effects of hydrocephaly.   She is not able to walk on her own, and will need the loving and patient care of a family to help her achieve her potential.

If you are unfamiliar with FAS, please spend some time researching this condition.  Just as with Down syndrome, FAS and FAE have a wide variation of effects on each child, both medically, physically, and cognitively.   This is typically dependent on how long during the pregnancy the mother consumed alcohol, and of course, how much.   There is no way to know this ahead of time.

$3,617.00 has been donated towards the cost of my adoption!


BOY, born August 2006


Nate is a handsome young man!   He was born with CP, and has some vision problems as a result of CMV (cytomegalovirus). He has brown hair and big brown eyes.   He is not able to walk on his own, but he will truly blossom in a loving family, who can provide the therapy and encouragement he needs.  We are hoping to learn if he is being treated for the CMV, but he is asymptomatic at this time.


$161.00 has been donated towards the cost of my adoption!


Jared (26)

BOY, born May 1, 2007

This handsome young man, with dark hair and dark eyes, was born with a rare genetic condition called Stickler Syndrome.  His medical records also indicate microcephaly, a common symptom of SS.

Individuals with Stickler syndrome experience a range of signs and symptoms. Some people have no signs and symptoms; others have some or all of the features described below. In addition, each feature of this syndrome may vary from subtle to severe.

A characteristic feature of Stickler syndrome is a somewhat flattened facial appearance. This is caused by underdeveloped bones in the middle of the face, including the cheekbones and the bridge of the nose. A particular group of physical features, called the Pierre Robin sequence, is common in children with Stickler syndrome. Robin sequence includes a U-shaped or sometimes V-shaped cleft palate (an opening in the roof of the mouth) with a tongue that is too large for the space formed by the small lower jaw. Children with a cleft palate are also prone to ear infections and occasionally swallowing difficulties.

Many people with Stickler syndrome are very nearsighted (described as having high myopia) because of the shape of the eye. People with eye involvement are prone to increased pressure within the eye (ocular hypertension) which could lead to glaucoma and tearing or detachment of the light-sensitive retina of the eye (retinal detachment). Cataract may also present as an ocular complication associated with Stickler’s Syndrome. The jelly-like substance within the eye (the vitreous humour) has a distinctive appearance in the types of Stickler syndrome associated with the COL2A1 and COL11A1 genes. As a result regular appointments to a specialist ophthalmologist are advised. The type of Stickler syndrome associated with the COL11A2 gene does not affect the eye.

People with this syndrome have problems that affect things other than the eyes and ears. Arthritis, abnormality to ends of long bones, vertebrae abnormality, curvature of the spine, scoliosis, joint pain, and double jointedness are all problems that can occur in the bones and joints. Physical characteristics of people with Stickler can include flat cheeks, flat nasal bridge, small upper jaw, pronounced upper lip groove, small lower jaw, and palate abnormalities, these tend to lessen with age and normal growth and palate abnormalities can be treated with routine surgery.

Another sign of Stickler syndrome is mild to severe hearing loss that, for some people, may be progressive (see hearing loss with craniofacial syndromes). The joints of affected children and young adults may be very flexible (hypermobile). Arthritis often appears at an early age and worsens as a person gets older. Learning difficulties, not intelligence, can also occur because of hearing and sight impairments if the school is not informed and the student is not assisted within the learning environment.

Stickler syndrome is thought to be associated with an increased incidence of mitral valve prolapse of the heart, although no definitive research supports this.

$1,103.05 has been donated towards the cost of my adoption!