Separated Yet Still Conjoined

Carl and Clarence Aguirre (The Formerly Conjoined Craniopagus Filipino Twins) and their mother Arlene, are three of the most courageous and miraculous individuals I've ever had the privilege of working with. Their journey began in 2002 when Arlene was told during her pregnancy and again after the birth of her twins that there was nothing that could be done for them. She was advised to bring them home to die. However, this single mother took her sons home and with frightened determination kept them alive and healthy until she could find someone that could help her sons. Arlene was not only forced to adapt to the physical obstacles of Carl and Clarence being conjoined at the head but she also had to endure many environmental obstacles while remaining focused on finding help. Arlene moved home to a rural village to be with her family after the twins were born. The home she shared with her parents, her brother, her sister, brother in law and nieces was small, had no running water, no electricity and was not well protected from inclement weather. Prior to Carl and Clarence's birth, Arlene worked as a nurse in Metro Manila and was the primary source of income for her family back at home in the province she was raised. After the boys birth, they needed twenty-four hour care and Arlene could no longer work. As if the physical obstacles and environmental obstacles Arlene had to face weren't enough, she now had to face extreme financial obstacles. Arlene often sacrificed her own well being in order to be able to insure that Carl and Clarence were receiving proper nutrition and the care they needed. In the province where she lived, Carl and Clarence were seen as oddities to be feared leaving Arlene with no support. Arlene remained determined while her love for her sons grew stronger and stronger. Her life had become defined by her son's rare condition. She decided that she would not accept "No" for an answer.

On September 10, 2003 Arlene, Carl and Clarence arrived in the U.S. with the assistance of two Medical Missions agencies, the PAL Foundation and two New York based hospitals that agreed to attempt the separation and rehabilitation of the boys. Arlene came to the United States in order to try and save her boys without ever meeting the doctors. She had less than the equivalent of five American dollars in her pocket, not one friend or family member and only six month VISAS to support her belief that Carl and Clarence deserved and could have a chance at separate lives. Arlene's strength, determination and selflessness exude the depths of maternal love.

After their arrival in the United States the Aguirre's experienced a whirlwind of medical tests, media exposure, culture shock and exposure to many individuals. Arlene, Carl and Clarence ultimately adjusted to their new environment and the daily care they were receiving. Arlene also slowly began to feel more secure in a foreign environment that she had now become dependent on. She understood and believed that her sacrifices would eventually allow her to see her dream come to fruition. * Two Separate Boys *.

In a span of almost two years Carl and Clarence had three major surgeries, countless hours of Physical, Occupational, Speech and feeding therapies. Finally on August 4, 2004 Arlene's dream came true. Carl and Clarence were wheeled into the operating room on one gurney and in the early morning hours of August 5, 2004 Carl and Clarence were wheeled out of the operating room on two separate gurneys. It was an emotionally charged experience that I will never forget. Arlene's, Carl's, Clarence's and the surgeon's determination and courage helped to create a miracle. After their separation, Carl and Clarence continued to receive inpatient rehabilitation services for fifteen months.

Carl and Clarence still both need further surgical intervention to close their skulls, close medical monitoring and continued therapies in order to obtain their functional potentials. The VISA'S that Carl, Clarence and Arlene have been renewed every six months due to continued medical necessity. However, there may come a point when the renewal is not approved. If Carl and Clarence were denied a continued stay in the United States and had to return to their home in the Philippines they would inevitably die. The environmental conditions and the unavailability of the necessary medical and rehabilitative care they continue to require would be detrimental to both Carl and Clarence's livelihood.

After months of searching a home was found that was temporarily donated for their use. Donations were also secured for the utility fees, medications, durable medical supplies, clothing and daily care as well as a $150.00 monthly food allowance at a local grocery store. The VISA'S that the Aguirre's hold do not allow for employment, therefore, all of their daily care needs can only be met through donations. Carl and Clarence are adorable, loving, happy seven year olds who now attend public school and continue to receive therapy services in their school environment. Both Carl and Clarence have exceeded all expectations. They are both making gains in all areas of their development. They are walking, talking, fighting for their mother's attention, fighting over toys and fulfilling their mother's dreams of watching her two sons play separately with one another.

Arlene, Carl and Clarence still have so many needs and no resources or true advocates to help secure their safety and futures. Even though Carl and Clarence have been physically separated the Aguirre family remains conjoined with and dependent on other living beings in order to survive daily.

Also of tremendous concern is the Aguirre's ability to continue to reside in the home that was donated for their use in the U.S. The donor of the house recently suggested that the family begin to locate another place to reside. Therefore, the search for a new residence has begun.

One can only hope that the courage, strength and inspiration this family has generously given not only to those individuals who work with them but to individuals around the world, would inspire a large community to assist them in obtaining all that they require in order to continue to thrive and enjoy a quality of life as well as continue to inspire and educate all those they so warmly touch.

A trust fund has been created to assist Carl and Clarence with their continued care. With your generosity we can continue providing the treatment and daily care Carl and Clarence need in order to thrive and meet their maximum potentials.

If you would like to contribute to the fund please make checks payable to "2006 Aguirre Trust" and mail your donation to:

Ronald E Feiner Esq.
100 Wall Street
23rd Floor
New York, N.Y. 10005

If you have any questions please feel free to contact me at (516) 840-8598

With Sincere Appreciation,

Meredith Gosin LCSW