I am writing because my family is in great need of assistance. Our 2 year old daughter, A’leeya, has a very rare genetic disorder called Pitt-Hopkins Syndrome (PTHS). At present time, we are current on 90% of around $30,000 in debt we have incurred in order to care for her, but we are nearing the end of this ability. Our savings is depleted and our family has given us a helping hand many times over. It is time for us to find an alternative solution.
Background: In August of 2010 my husband and I noticed A’leeya, born February 11, 2010, was not progressing like our other daughters (A’leeya has two beautiful sisters A’myla 11, and A’brayla 7). We got her evaluated and discovered our suspicions were correct, she was determined to be developmentally delayed.
After many doctor’s appointments and assessments we were told by her geneticist, the day before her first birthday, that she has a rare genetic syndrome called Pitt-Hopkins Syndrome (PTHS). More specific can be learned about this syndrome at www.pitthopkins.org . In general, children and adults with PTHS are globally developmentally delayed and require regular therapy to help with progression and everyday living.
God’s Plan: Needless to say we were devastated no parent wants hear that their child is permanently impaired. However, we also quickly realized God’s plan. You see in late 2007, I was laid off. Less than 2 months later the economic crisis was nationwide, I desperately sought employment with so many others. In January of 2009, I landed the only job I was interviewed for out of hundreds I had applied, a special needs teaching assistant in our local school district.
My prior training and experience with special needs children before the birth of A’leeya gave me the confidence and understanding to not dwell or question “why me”, or “why us”! In fact, why not us? My husband and I have a great untold love story and we have a solid foundation rooted in freindship. Friends and family all agree that, of course, god provided us A’leeya because he knew she would get exactly what she needs: patience, understanding, devotion, guidance and lots of love!
Tough Decision/Right Decision: Our current crisis came because we made the tough to decision to cut back our income to ensure that her needs are met during these first few critical years. So, I have stayed home with her to ensure she is getting the daily therapy she needs for progression. It is working!
She has made so much progress over this last year and half. She is walking with the assistance of a walker, she sits independently, she is drinking independently, she is beginning to self-feed, and her communication is improving every day. The majority of children with PTHS are non-verbal and she is no exception, however, she is really trying to talk through sign language, gestures, pictures and even sounds! She just said “Apple” the other day. The words come and go, but we remain hopeful.
Changes Ahead: A’leeya will begin school half day with the local school district in February. She will be in a special needs classroom, just like the one I used to work in. I have been looking for work and I hope to obtain a position soon. During our journey I obtained my Masters in Human Resource Management! (Yes, I have student loan debt, and I have not included it in my gift request, because if we are able to raise this money we will be able to make on-time payments to my student loan obligation and rightly so!) I hope to find a job and a qualified caregiver to watch and assist A’leeya for the half of day she is not in school. Another gift from above is that we live in a college town with plenty of qualified students!
Habitat for Humanity Dream: Lastly, the gift of helping us with this debt would allow us to get a Habitat for Humanity Home. We currently are ineligible because of our debt. Right now the home we live in is very old, extremely energy deficient, and with numerous steps making it increasingly difficult to carry A’leeya up and down. These steps would also make it difficult for her to navigate through our home independently when she is able. Whether or not we can make this wish come true we will be moving from our home in August of 2013. Overall, our home has put a great financial and physical strain on our family.
If we could qualify for a Habitat Home we would be eligible for the building of a handicap accessible home that is affordable and energy efficient! This program would also include budget counseling and debt management that would help us to better manage our finances in the future.
Pay it Forward: If given this opportunity we will continue to pay it forward in any chance we get. We have always been a family that helps others, over the years we have help a handful of friends and family members in need and this will never change. We thank you for your time and consideration and thank you for considering us for donation!