Mason's Strength

Bringing Home Sister

2007-04-12T14:36:00.000-07:00

On December 14, 2006 we brought Lauren Esperanza home to her two brothers. Mason affectionatley calls her "sissy" and absolutely adores her. Lauren is 9 and loves Barbies, school, her cousins, her grandparents, gymnastics, swimming, riding bikes, and fried chicken! Parker wants to be just like her. She doesn't take that very well though. We are adjusting to having a 9 year old and she is adjusting to having two little brothers that follow her everywhere. Lauren, Parker, and Mason are biological siblings and we are very blessed to have them call us mom and dad!

One Year Later

2007-04-12T12:45:00.000-07:00

It's been a year since I have posted so I guess you can say no news is good news. But that doesn't mean we haven't had our share of bumps in the road. A lot has happened. So let's get caught up!

As of today Mason is doing amazingly well. By the grace of God he has made a full recovery. He is line free, G-button free, and is down to two medicines. Two from about 15! He has had pnemonia, RSV (again), skin rashes that make your skin crawl, a staph infection, and a few days and nights of just something but not enough to put him in the car and head to Ft. Worth. Leaps and bounds have been made and we have so many to thank for that! He is a talking, walking, running, silly, loving, cuddly, and miraculous little boy. Everyday is a day to be thankful for his precious life. We go to clinic in Ft. Worth about every 6 weeks. And since the feeding button was removed we go to feeding therapy where he puts on quite a show for his therapist. He chews and swallows for his Shannon but not always for us at home. Its a battle of the wills at its best.

We look forward to a fun filled summer now that he can swim and be out and about!

Mason is home!

2006-04-07T14:39:00.000-07:00

Mason is finally home from the hosptial and Ronald McDonald House. He is engrafted 100%. We go to Ft. Worth every Monday for his clinic appointment. So far he is doing great. He is eating well and seems to be happy to be home. But he suffers from separation anxiety, which is understandable. On day 100 the doctors will run more tests to see how the cord blood is doing and how he is responding. We are very excited and continue to pray for his complete recovery.

We have more exciting news...we are adopting Mason and Parker's sister. She is 8 years old and lives in Guatemala. We will be going to visit her in May and hope to bring her home by Christmas.

We want to thank everyone for all the prayers and support.

Transplant Day!

2006-02-10T19:26:00.000-08:00

Mason was transplanted with a cord blood unit on February 9, 2006.

You Can Help!

2005-11-11T09:39:00.000-08:00

A special fund is being set up in Mason's name to help support Orphan Disease research and to subsidize medical bills for adopted children suffering from serious diseases. You can help by purchasing a bracelet in Mason's honor. Please send a self addressed envelope along with your donation* to:

Mason Bauman
120 Merkle
Norman, OK 73069

Bracelets come in X-Large, Large, and Child sizes.
Mason's Strength and Wiskott-Aldrich Syndrome are printed on each bracelet.

* Minimum $5 donation per bracelet, please specify number and size of bracelets you would like to receive.
Make checks payable to:
Mason Bauman/Mason's Strength

For more information on Orpahan Diseases go to:
www.rarediseases.org

Blood and Platelet Donations:
There is always a need for blood and platelet donations everywhere. If you would like to donate in Mason's name please go to a Carter Blood Bank (only available in the state of Texas). The follwoing information will be needed to donate in Mason's name:

Name: Mason Fernando Bauman
DOB: September 17, 2004
Home Address: 120 Merkle, Norman, OK 73069
Hospital: Cook Children's Medical Center, Ft. Worth, Texas

Even if your donation can't be used directly for Mason it will be used to help another child while helping us with our medical bills as we receive pint for pint.

If you are not in the state of Texas, we encourage you to donate when and where you can. There are countless children who depend on blood and platelet donations to safe their life. Mason is a true testimony of that.

Bone Marrow Registry:
If you are able to get on the bone marrow registry, you may do so at ANY blood center. There is a desperate need for Hispanic and African American donors.

Cord Blood Donation:
Please consider donating your baby's cord blood. Ask your OBGYN for more information. Cord blood saves many lives and is sometimes the only chance for a "cure" for transplant patients.

Helpful Resources

2005-10-27T19:22:00.000-07:00

www.cookchildrens.org

www.stjude.org

www.forpetessakefoundation.org

www.davidmcnally.blogspot.com

Wiskott-Aldrich Syndrome

2005-10-26T19:00:00.000-07:00

Disease Information
Inherited Immunodeficiencies: Wiskott-Aldrich Syndrome (WAS)
Alternative Names: WAS

Definition
Wiskott-Aldrich syndrome (WAS) is an inherited disorder of the immune system that affects males but not females. It is characterized by recurrent infections, low numbers of circulating blood platelet cells (thrombocytes) and eczema (skin rash). The disorder is caused by a mutation (mistake) in the WASP (Wiskott-Aldrich syndrome protein) gene.
The mistake results in defective functioning of T cells, B cells and platelets. In the normal individual the T cells are responsible for providing protection against certain viral and fungal infections. B cells are precursors to antibody producing cells.
Platelets (thrombocytes) are the cells responsible for blood clotting. The most characteristic feature of WAS is a low platelet count with small platelets. As a result of the gene defect, males have an increased susceptibility to infections and bleeding. The diagnosis is confirmed by mutation detection (looking for a mistake in the WAS gene).

Incidence
Wiskott-Aldrich syndrome occurs with a frequency of about 4/ million.

Influencing Factors
Pattern of inheritanceThe gene for Wiskott-Aldrich syndrome is found on the X chromosome. Because females have two X chromosomes, if they have a mutation on one X chromosome, they have a spare X that can help compensate for the mutation. Males have one X chromosome and one Y chromosome. Since they do not have a spare X chromosome, they show signs of a mutation inherited on the X chromosome. Although, a female who carries a mutation for Wiskott-Aldrich syndrome on one of her X chromosomes, shows no sign of immunodeficiency, her sons and daughters have a 50 percent chance of inheriting the X chromosome with the mutation (and a 50 percent chance of inheriting the normal X chromosome). The sons who inherit the mutant X chromosome will have WAS and the daughters who inherit the mutant X chromosome will be carriers like their mother. Carriers of WAS can be identified by mutation detection (a laboratory test).
All of the daughters of a man with Wiskott-Aldrich syndrome will be carriers of WAS; but the sons, who have inherited his unaffected Y chromosome, will be normal. About 50 percent of patients with Wiskott-Aldrich syndrome will have a brother, cousin or uncle with WAS. In most remaining families, the affected individual represents the first sign of a new mutation (mistake) in the WAS gene in his family. We do not know what causes new mutations in most families.
Typically, the disorder affects males, but there have been some females who appear to have the same physical problems as males with WAS, without the genetic mutation (mistake).

Clinical Features and Symptoms
The diagnosis of Wiskott-Aldrich syndrome is suspected in males who have bleeding in the newborn period. This is most often manifested as bloody diarrhea. Other patients are recognized to have WAS when a blood count (CBC) that is done during an infection, shows a low platelet count with small platelets.
Because of the defect in T cells and B cells, patients with WAS are at increased risk for both bacterial and viral infections. Otitis (ear infections), sinusitis and pneumonia are frequently seen in patients with Wiskott-Aldrich syndrome. Viral infections caused by herpes simplex and EBV (Epstein-Barr Virus) can also be troublesome.
Autoimmune disorders, caused by an abnormal immune system, can also be observed in males with WAS. These include vasculitis, arthritis, and autoimmune hemolytic anemia.
An increased incidence of malignancy has also been observed in patients with WAS. Specifically, EBV-related brain tumors, leukemias and lymphomas are seen.

Survival Rates
The prognosis for males diagnosed with Wiskott-Aldrich syndrome has improved due to antibiotic therapy, intravenous gammaglobulin (IVIG) and bone marrow transplantation. However, because T cell function declines over time, WAS is considered a progressive disorder and without bone marrow transplant males usually die in their early twenties from an overwhelming infection or a malignancy.
Males with Wiskott-Aldrich syndrome are encouraged to lead as normal a life as possible, which includes good health habits.

Treatment Strategies
At St. Jude, males with Wiskott-Aldrich syndrome are treated with monthly infusions of gamma globulin (IVIG), chronic prophylactic antibiotics, and vigorous skin care for the eczema. Some patients are also given anti-viral medicines for herpes simplex prevention. At some centers, patients are treated with splenectomy to improve the platelet count.
At this time, bone marrow transplant is the only cure. Family members (siblings and parents) can have a blood test to see if they are a suitable donor (match) for the affected male for a bone marrow transplant. If no family member is a match, a matched unrelated donor may be used.

Current Research
• Better understanding the role of the WASP gene in the normal hematopoietic system• Continually improving transplant regimens to cure Wiskott-Aldrich syndrome• Investigating the use of gene therapy to cure WAS

*Information provided by St. Jude*

Mason’s story

2005-10-25T17:31:00.000-07:00

Mason Fernando Bauman was born on September 17, 2004 in Guatemala City, Guatemala. Just four days after his birth our adoption agency contacted us and asked if we wanted a baby boy. We were thrilled. Our prayer was answered!

Our answered prayer didn't stop there. In October we were asked if we wanted to adopt his two year old brother. We were so surprised but excited. We couldn't wait to bring home two beautiful brothers and be a family.

In January we were told that Mason had been diagnosed with Leukemia. We were devastated but anxious to bring him home and get him well. Our adoption case was rushed and we brought both boys home on March 11, 2004. Mason was immediately admitted to a children's hospital were he was re-tested for Leukemia. The result was negative. The doctors knew that Mason was very sick but didn't know why. After several weeks of testing they told us he had a very rare disease. Mason was diagnosed with Wiskott-Aldrich Syndrome. Since then he has been fighting every day. We are waiting for a bone marrow transplant and pray that the transplant will cure him. He is truly our "miracle baby" and inspires everyone who meets him.

To learn more about Mason and his journey to transplant go to:
www.carepages.com
password: masonfernando