Hugs and Kisses Crafters: Donating Handmade Love

If you receive a gift with this tag, you have received a very special gift, but are going through a very difficult time in your life. This tag is attached to the gift boxes from a group that my sister and I started called Hugs & Kisses Crafters. If you received a gift with this tag, you got it because you have either a premature or terminally ill baby. Enclosed in the box are handmade items, most likely crocheted - probably a blanket and matching hat, perhaps a sweater or tiny poncho, or little booties. I hope you never have to be on the receiving end of one of these gifts, but in case you would like to be a part of the giving end, I would like to share with you about this ministry and how you can take part.

It all started when my sister, Pam Freeth, gave birth to her third child, Olivia Danielle Freeth. We were all expecting a normal full term baby girl. When Olivia was born, the doctors immediately knew something was wrong. She had low muscle tone, was unable to breathe on her own or swallow, and had some unusual characteristics to her body. She also had very difficult to control seizures.

The doctors went through a myriad of possibilities before settling on Zellweger Syndrome, a rare, congenital (present at birth) disorder characterized by the reduction or absence of peroxisomes (cell structures that rid the body of toxic substances) in the cells of the liver, kidneys, and brain. Zellweger syndrome is one of a group of genetic disorders called peroxisomal diseases that affect brain development and the growth of the myelin sheath, the fatty covering which acts as an insulator on nerve fibers in the brain. The general prognosis for Zellweger babies is 6 months to 1 yr at best, however when the Freeth's first took Olivia home, the doctor's told them not to expect more than a few weeks.

It was the most difficult time in my sister and brother-in-law's lives. They had to go to one income so Pam could care for Olivia. Receiving handmade items from total strangers touched Pam so much that we both knew after Olivia passed away (on December 20, 2004 - just shy of 5 months old), we too wanted to reach out to families similarly. We started the Zellweger Baby Support Network, and have helped many families with ZS Babies. We then decided that we wanted to have our own group to make handmade items, not only for the ZS babies, but also for premature and terminally ill babies. Pam needed to learn to crochet though, so she turned to me and another friend to be taught. She picked it up pretty quickly and soon we were preparing for our first donation.

Our first donation was in June of this year. We went to the NC Children's Hospital, which is where Olivia was taken after she was born and every time she was hospitalized during her short life. The picture to the left was taken in the NICU as one of the nurses admired the items we brought. The nurses were so excited to receive all the tiny preemie items, especially the micro-preemie items. They explained to us that preemie and micro-preemie items are very hard to find. When families receive things like what we brought, it is often their first chance to put their baby in clothing that actually fits. Here are a few more pictures of some of the items we took that day.

Being a small group, our next donation was not until August. This time, a member from our Albany Georgia chapter headed up the donation and took our handmade items to Phoebe Putney Memorial Hospital NICU. We were still a small group (4 active online and 3 active offline) but we managed to donate 50 handmade items: 21 blankets, 23 hats, 4 sets of booties, 1 sweater/bootie set, 1 hat/bootie set. Here are a few pictures from that donation event.

In October, a member from our Rochester New York chapter hosted the donation. This donation had three recipients: Golisano Children's Hospital at Strong, Geneva General Hospital , and a Romanian orphanage through R.O.C. Ministries. We had five active members for this donation and sent 34 items to be donated. For the Romanian orphanage, some of the items went directly to the orphanage, and other items were made more intricately for auction to help support the orphanage. The representative from R.O.C. Ministries was so excited to see that not only had we sent items for the auction, but also 3 sweaters and 3 blankets to take back with her to the orphanage. Here are a few pictures of the items that were donated for the October events:

Since we are a small group still, and with the holiday season approaching, we decided that December would be a good time to dedicate our donations to storing up blankets for ZBSN. Each member was instructed to make 2 blankets, a boy and a girl blanket/hat set, but a little fancier than what we normally do, since the Zellweger babies are our special focus. Each member will keep her blanket/hat sets on hand ready to mail to the next family when needed. We have been sending items to ZS families already, but have been making them as the families came to ZBSN. Since our inception we have sent 8 Zellweger Baby special packages with handmade blankets and hats, sweaters and other miscellaneous items.

Also in December, some of the HKC members decided to make girl blanket/hat sets and take them to local hospitals along with a flyer about Olivia and Zellweger Syndrome on December 20th in honor of Olivia's life. We don't have any pictures posted from anyone yet for the December donations, but you can keep up with what we are doing on our website: Hugs & Kisses Crafters.

Being a part of this group over the past several months has been so fulfilling. It takes something I love to do - crocheting, and mixes it with something I have always wanted to do - touch someone's life. I think it means even more to me, having gone through the loss of Olivia, knowing the preciousness of even a short lived life. My life was touched by someone doing for me what I now do for others. I have a treasured little crocheted pink angel hanging in my living room that reminds me of the miracle of Olivia every day. It does my heart good to know that I can pass that feeling on to someone else when I make a blanket or hat for another little miracle baby.

I pray for the baby and family that will receive the item I am making. I pray that the baby will have health and happiness, the family peace and unending love for this little life they have been blessed. I pray for comfort and peace for the baby and family, if life on earth is not possible. I really enjoy what I do and know I am making a difference in the lives of families during what is probably the most difficult time of their life. Are there other things that could be done to make a difference? Of course, but this is what I have chosen.

Should you be interested in volunteering with Hugs & Kisses Crafters, feel free to come check us out. We have a good time socializing on our group website, and each of us are working to find members locally as well. That is not required, but you can start a local chapter if you would like. Our next donation event will be in February to Kosairs Children's Hospital in Kentucky. Kosairs was picked because it is the hospital where another Zellweger Baby, Anna Turci, was treated. You can read Anna's story at the ZBSN site too. We may be getting 4-5 new crafters from Kentucky also, so hopefully we will be able to send lots of items to Kosairs!

Eventually we would like to have a different donation event each month, but for now, it is every other month. We would love for you to join us! If you don't know how to crochet, ask - there may be someone in your area that can teach you, and we have actually been able to teach some stitches over the net! If you are a crocheter, it is a fun group that shares lots of patterns and fellowship, and you have a really good excuse to make stuff! If you make something other than crocheted items that could be appreciated by families of premature or terminally ill babies, you can join too! We just seem to attract crotcheters!

Zellweger Baby Support Network, the sponsor of HKC, is now an official charity helping many families with babies that have Zellweger Syndrome. Donations can now be accepted and in the near future, donations to ZBSN will be considered tax deductible. Our hope is that we will continue to grow and be able to contribute funding to research to help learn about this disease, to find a cure and/or prevention. Right now, it is a death sentence. The parents of these children have a 25% chance of having another child with the disease.

There are a lot more details on the Zellweger Baby Support Network site if you want to learn more. If you would like to volunteer as an emotional supporter at ZBSN, please come and join in the ongoing conversation on the site. As a volunteer with ZBSN, you will connect with these families online or in person, if they are in your area and you so choose. You will offer emotional support and a caring ear (or eye I should say, since it is an internet community). You can make a difference in the lives of these families. While it is hard to emotionally support these families, knowing these babies will most likely die, it is also incredibly rewarding to be a part of their lives during such a time. They need love and support. If you have a heart for either of these ministries, please join us!