Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.

Monday, November 15, 2010

La Monstrua

Shown below on the left,  is a portrait of Dona Eugenia Martinez Vallejo. This was created by the Spanish baroque court painter, Juan Carreno de Miranda (1616-1685). It was painted in 1680, when she was 6-years-old. She was brought to the court of Charles II of Spain and given the name, "La Monstrua" or "The Monster".

Nicholas John Peters in 2010 at 8-years-old
 Eugenia Martinez Vallejo in 1680 at 6-years-old

It is said that upon seeing this painting in a museum in Madrid, Dr. Andrea Prader immediately recognized her features to be consistent with Prader-Willi Syndrome.

Although we may never know if this child did in fact, have PWS, the painting and 17th century descriptions of her condition strongly support this hypothesis. This painting is often regarded as the earliest illustrations of PWS.

La Monstrua has continued to be an intriguing figure as evidenced by an outdoor sculpture in Aviles created in 1997 by the Spanish artist Amado Gonzalez Hevia who based his sculpture on Juan Cerreno de Miranda's portraits of Eugenia.

Shown above on the right, is my son, Nicholas in the year 2010 at the age of 8-years-old. (He is performing the Pledge of Allegiance).

It is amazing how far we have come in 330 years.

Once again, these photos are a true testament to the miraculous benefits of GH (growth hormone) to children diagnosed with PWS.

GH has allowed my son to become longer, leaner and stronger. It has helped with his fine and gross motor abilities. It has strengthened his spine and improved his scoliosis. He breathes and speaks better. His coordination and balance is improved. His overall strength and endurance is greatly improved.   

To put it simply, GH has allowed my son and many others diagnosed with PWS, to live healthier and longer lives.

It is important to remember however, that GH treatment does not assist individuals diagnosed with PWS to control their insatiable appetities.

For this, there is still no cure.

Throw Away Children

Infants and children diagnosed with Prader Willi Syndrome are often put up for adoption.

Our PWS community is always informed when one of these unwanted children is listed. A two-month-old baby boy named Luke, is the latest addition.

In a society obsessed with white teeth and zero percent body fat, it is not too difficult to understand why a child diagnosed with PWS is abandoned. The insatiable appetite, behavioral difficulties and potential for obesity is just too much hardship for some to consider. Caring for individuals diagnosed with PWS requires structure and vigilance from a family, it requires doctor visits, early intervention and therapy sessions. It is a big change to a family's lifestyle. It is just a sacrifice too difficult for some to accept. As a result, children with this awful disease are left behind, unwanted, unloved and abandoned.

Each time a child is offered up for adoption, my husband and I have the same conversation. We consider it. We consider it seriously. We know that there are not too many parents available on this planet who are familiar with feeding tubes and scoliosis. We know the chances of a child with PWS being adopted are very slim. We know that it is usually a family who already has a child with PWS that ends up adopting the child.

The following is a listing of Baby boy Luke. If you, or anyone you know is interested in adopting this beautiful child please contact Leslie below.

Thank you all for your consideration.

Baby boy "Luke"  born September 7, 2010
Born full-term at 39.5 weeks
6 lbs 4 ozs
19 1/2"

Baby Luke was diagnosed with Prader-Willi syndrome. He was discharged from the hospital on October 25th, and is with a temporary care family.  He is being fed by a g-tube and is doing very well. A speech therapist, occupational therapist, and physical therapist have been working with him weekly.  Both birth parents continue to express a strong interest in making an adoption plan for Luke.

Birth parents are educated professionals. Birth mom received excellent prenatal care of this planned pregnancy. No history of alcohol or drug usage. The birth parents are willing to consider an adoptive family residing anywhere in the USA. Their number one concern is that an adoptive family will have a great deal of knowledge about Prader-Willi syndrome and be ready to offer a structured environment in a loving home to their son with full understanding of challenges the child may face. Birth parents are not requesting an open adoption.

Please let us know as soon as possible if you would like to be considered as adoptive parents for this little boy.

Thank you,

Leslie Wright, MSW
Birth Parent Counselor
 Family Resource Center
5828 North Clark St
Chicago, IL 60660